Autism or PDD Information
SENSORY INTEGRATION STRATEGIES
Previous trials have shown that omega-3s can improve memory, mood, concentration and behaviour.
Researchers in the UK will supplement 38 pupils, aged 10 to 16, with the oils for six months and closely follow their behaviour.
The children have problems like attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), autism, dyslexia, Asperger's syndrome and pervasive development disorder.
Some of them have already been prescribed drugs like Ritalin, used to treat ADD and ADHD, but which also has side effects like decreased appetite and insomnia. The new study will also examine whether fish oil supplements can help reduce the side effects of this medication.
The findings will be analysed by Dr Madeline Portwood, a senior educational psychologist working for Durham county council.
Most kids with PDD's simply present with a language delay. Some never acquire language, but most will have a slight regression, losing the ability to say a few words that they've already learned. This may occur at around 18 months of age. Most parents will report no difficulties prior to this period, but some may observe a "different interactive," eye contact or socialization impairment, lack of pleasure with regard to being touched, or other unusual behavior from as early as 1 to 3 months of age, in extreme situations.
Typically, kids with PDD's will not get diagnosed initially. The statistics indicate that only about 10% of kids with autistic disorders get diagnosed following the initial complaint of the parents that "something is wrong" with their child.
At the onset of symptoms, when the child regresses, several difficulties appear. There is loss of eye contact, the child drifts into his own world, may sit quietly for prolonged periods of time, and develops pervasive ignoring of other people. This means that he may be called several times, even very loudly, and ignore the calling as if he is deaf, yet when he hears even the slightest sound of something he likes, such as song from a favorite video, he runs to it immediately. Some of the kids develop hand flapping, toe walking, and severe temper tantrums, especially when required to change from a favorite activity to some other activity. Arranging toys in rows, spinning themselves or objects, or showing fascination in spinning objects, straight lines, or trains is a common behvior.
The causes for autism are most likely genetic. In most kids who present with a mild form of autism, such as in PDD NOS, despite a very extensive workup that may include blood test, urine tests, imaging studies, and other tests, everything comes back normal. The general consensus is that autism and PDD NOS are genetic disorders that can't be identified in current genetic testing. This may never become specifically identified in the future because "autism" is a general term of a behavioral pattern that may be caused by several different genetic abnormalities. This means that different genes or different combinations of defective genes may result in the same presentation of PDD NOS or autism.
Identified causes for autism include several chromosomal abnormalities involving different "genetic sites." Fragile-x syndrome involves the x chromosome, Angelman's syndrome involves chromosome 15, and many other chromosomal abnormalities may present with "autism." Other disorders such as Touberouse sclerosis, a disorder causing skin and brain abnormalities and frequent severe epileptic seizures (chromosome 9 and 16) may present with "autism" also. Some "metabolic disorders" such as PKU (phenylketonuria), where a substance (phenylalanine) accumulates in the brain, and other disorders of metabolism may present with autism.
Another important condition that may cause "autism" is a form of a seizure disorder or Laundau Kleffner syndrome. This disorder, also known as acquired epileptiform aphasia, is a disorder in which seizures develop from the area responsible for speech (in the left hemisphere), "robbing" the child from acquiring language and is associated with an autistic regression.
Behavioral modification program for a child with PDD:
This behavioral modification program is based on training the child to behave in a more appropriate and socially accepted manner. This should consist of an immediate correction of any aberrant behavior, utilizing a special holding technique to overcome temper tantrums. Many of the most difficult behaviors, if dealt with early, may become controlled, or if neglected, may lead to a wild, impulsive, uncontrollable behavior that may require institutionalization. In many families of children with PDD, instead of the children being taught normal, socially accepted behavior, the entire family learns abnormal behaviors from the kids in the process of trying to accommodate them to prevent the temper tantrums. This is why controlling the tantrums is so important. Accommodating these kids by giving in to the abnormal behaviors only delays the tantrums and makes the abnormal behaviors the accepted standard for those children with PDD.
A structured daily routine is important. The child will perform best under familiar conditions, including location and activities. Later, as the situation improves, the rigid routine may be gradually modified, as tolerated.
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Temper tantrum control: Controlling temper tantrums is of extreme importance.
The holding technique, as demonstrated during the office visit, requires a firm hold of the child, with the back to the parent's chest; the child's legs should be held between the parent's legs. During the holding time, the parent mus try to communicate with the child, calm him/her, yet not give in to the behavior that led to the tantrum. This procedure is not a form of punishment. It is devised to protect the child and others from the erratic behaviors. It must be done gently, not to hurt the child, yet firmly to get a clear unequivocal message through. It definitely is not meant to be "fun" time and a firm approach is required. Communication must be short, clear, and firm, expressing the parent's appropriate emotional reaction to the behaviors that led to the tantrum. The reaction (firmness of communication) must be proportionate to the severity of the behavior. This will also teach a child whose ability to understand emotional responses are impaired, how one must react under different circumstances. The main objective of the holding and the behavioral modification program is to correct inappropriate behaviors, thus trying to normalize the child's routines and behavior, including all social interactions as much as possible.
There are three priorities, when it comes to "insisting" with a child over behavioral issues.
First priority: Temper tantrums and inappropriate behavior that if left unchanged may potentially become life threatening, such as hitting, throwing objects, jumping out of high places or windows, running into the street, or refusing to eat, must be attended to immediately, without compromise.
Second priority: "Sitting skills." Behavior, that if left alone, will make it impossible for the child to sit in class and, therefore, impossible to attend school with his/her peers, regardless of his abilities or "baseline IQ." This consists of teaching sitting skills. This may be accomplished while sitting for dinner with the rest of the family, sitting in a restaurant or at any family or social gathering that require sitting skills.
Third priority: Dealing with the "repetitive ritualistic habits. Unusual "bizarre" behaviors, that may result in social isolation or difficulties, if left unchanged. Such are inappropriate play habits, pervasive repetition of activities, self-stimulatory behavior, hand flapping, persevering into strict interests or production of unusual sounds. This may be done with a simple firm "stop!" command, and by directing the attention to more appropriate behaviors.
by Edward F. Group III, D.C., Ph.D, N.D.,CCN
Because the autistic person may be sensitive to foods, there will have to be changes in diet to help accommodate this condition. Many autistic people are allergic to proteins like gluten (found in wheat, barley, oats and other foods) and casein (found in human and cow's milk). Many parents of autistic children who have removed these foods from the diet have, in many cases, observed positive changes in health and behavior. Research strongly suggests that many autistic individuals may be sensitive to dairy products and certain fruits, such as strawberries and citrus fruits, which can affect the immune system. These food products may increase or magnify various problems such as headaches, bedwetting, "spaced-out" appearance, stuttering, whining, crying, aggression and depression. Increasing the amount of vitamins, such as vitamin C, may reduce allergy symptoms. Many people suffering from autism need to change things within their life to help reduce the effects of autism.
Other changes that help include eating a high fiber diet and eliminating alcohol, caffeine, canned and packaged foods, carbonated beveages, chocolate, all junk food, refined and processed foods, wheat, salt, sugar, sweets, saturated fats, soft drinks and white flour products. Autistic individuals may want to have a hair analysis performed to check for heavy metal poisoning.
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PDD or pervasive developmental disorder is a behavioral disorder of speech, communication, social interaction, and repetitive type compulsive behavior. Autism is a form of PDD. There are five types of PDD's. The most commonly encountered are PDD NOS (pervasive developmental disorder not otherwise specified), childhood autism, and Asperger's syndrome. All these "different" conditions have common diagnostic and physiologic features but differ slightly by the specific diagnostic criteria.
How is PDD or autism diagnosed?
The diagnosis of PDD is clinical, meaning "what you see is what you've got." One needs to meet specific diagnostic criteria for the different conditions, but the general requirements are that one must have symptoms that belong to the three main areas of impairments:
Childhood autism
Asperger's syndrome
Childhood disintegrative disorder
Rett's disease
PDD NOS or pervasive developmental disorder not otherwise specified
This section will give general guidelines, providing a superficial understanding of the differences between these above-mentioned disorders. A better, more specific understanding of these disorders is given by the specific DSM IV criteria for each disorder.
A. Childhood autism
Always presents before 36 months of age, these children may have some speech developmental and social interactive regression, usually around 18 months of age. The diagnosis of childhood autism must meet the specific DSM IV criteria and will therefore present with poor eye contact, pervasive ignoring, language delay, and other features. Per definition, these children will have a severe impairment in speech, communication, or social interaction. Many of them will be completely non-verbal and "in their own world."
B. Asperger's syndrome
These are kids with a form of autism that affects language less, yet there are difficulties with appropriate speech and communicative development. Mostly, however, these children have social interaction difficulties and impairments related to a restricted, repetitive, stereotype behavior. These kids may have very high IQ's, may do very well academically, have a superior memory for "unimportant" details, such as the birth dates of all baseball players, some historical or geographical trivia, yet they lack the skills to care for themselves and live independently. These individuals may talk repetitively about a certain topic without understanding that it may be boring to others. The "amount" of memory of these individuals is incredible and one may expect different degrees of impairments with Asperger's syndrome. This may involve more or less memory and more or less social communicative impairment with regards to being able to live independently. As long as a child or individual seems "different" or "odd" and has a thought process that doesn't fit the way everyone else thinks, yet shows some of the required autistic characteristics, Asperger's syndrome should be considered. Many people with this condition remain undiagnosed because of their ability to compensate with their memory or excellent aademic abilities, yet they are considered by others to be "socially inept," "weird," "nerds," "bizarre," "eccentric," etc.
A typical example of a child with Asperger's syndrome would be that of a child who has some odd behaviors, poor eye contact, "sluggish" social interaction abilities, and an extreme interest in a central topic such as a washing machine. The child likes to sit and watch the washing machine door rotate, knows everything about it including its operative and professional manual and may spend hours perseverating about it. Such a child when he has a play date, may try to involve his "friend" in his most exciting interest (the washing machine) without realizing how boring it is to others and that will be the end of the play dates forever. This pattern may present itself in different degrees and circumstances, but the prinicipal is the same: the lack of the ability to understand how other people perceive what you do, say, or express with body language and facial expressions.
C. Childhood disintegrative disorder
These are kids who develop normally for the first 3 years of life. Later they seem to regress and develop some autistic features associated with a severe functional impairment. These children must be thoroughly evaluated for the possibility of the development of seizures, affecting the speech areas of the brain, or Landau Kleffner syndrome (acquired epileptiform aphrasia), where seizure activity "robs" the brain from previously acquired speech.
D. Rett's disease
This affects only girls. These are girls who develop normally until 6 months of age and regress. Their regression is associated with microcephaly (small head). The head size seems to stop growing from 6 months and on, from the time of the observed regression. Recently a specific chromosomal marker (MEC-P-2) has been associated with this disorder and is now commercially available in some laboratories.
E. PDD NOS
PDD NOS will present similarly to the kids who have autism (some people argue that these conditions should be combined as one), but will have a lesser degree of a severe impairment. These kids are more likely to be verbal and have some degree of verbal or non-verbal effective communication, yet they must have the autistic features (as per the DSM IV criteria) and a severe impairment in social interaction, communication, or repetitive stereotype behavior. This term is reserved for children with a severe impairment who do not fully qualify for any other autistic diagnosis, due to age of onset or combination of autistic features.
The full diagnostic criteria for the pervasive developmental disorders are outlined below. As mentioned above, the diagnostic criteria for the autistic (PDD) disorders are defined by the DSM IV criteria.
Childhood autism
A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
Qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors 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 (e.g., by a lack of showing, bringing, or pointing out objects of interest)
lack of ocial or emotional reciprocity
Qualitative impairments in communication as manifested by at least one of the following:
delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
stereotyped and repetitive use of language or idiosyncratic language
lack of varied spontaneous make-believe play or social imitative play appropriate to developmental level
Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of 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, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
persistent preoccupation with parts of objects
Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
The disturbance is not better accounted for by Rett's disorder or childhood disintegrative disorder.
Asperger's syndrome
Qualitative impairment in social interaction, as manifested by at least two of the following:
marked impairment in the use of multiple nonverbal behaviors 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 (e.g., by a lack of showing, bringing, or pointing out objects of interest)
lack of social or emotional reciprocity
Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of 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, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
persistent preoccupation with parts of objects
The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
There is no clinically significant delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other thanin social interaction), and curiosity about the environment in childhood.
Criteria are not met for another specific pervasive developmental disorder or schizophrenia.
Rett's disorder
All of the following:
apparently normal prenatal and perinatal development
apparently normal psychomotor development through the first five months after birth
normal head circumference at birth
Onset of all of the following after the period of normal development:
deceleration of head growth between ages 5 and 48 months
loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., handwringing or handwashing)
loss of social engagement early in the course (although often social interaction develops later)
appearance of poorly coordinated gait or trunk movements
severely impaired expressive and receptive language development with severe psychomotor retardation
Childhood disintegrative disorder
Apparently normal development for at least the first two years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior
Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas: expressive or receptive language social skills or adaptive behavior bowel or bladder control play motor skills
Abnormalities of functioning in at least two of the following areas:
qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypies and mannerisms)
The disturbance is not better accounted for by another specific pervasive developmental disorder or by schizophrenia.
PDD NOS
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills or when stereotyped behavior, interests, and activities are present but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, schizotypal personality disorder, or avoidant personality disorder. For example, this category includes "atypical autism" - presentations that do not meet the criteria for autistic disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.
Social interactions
Repetitive stereotype behaviors
These symptoms coupled with a severe impairment in speech, social skills, or repetitive stereotyped behavior qualifies one for PDD NOS in the milder situations and for the other autistic conditions in the more severe presentations.
At times, especially when diagnosed early, it may be difficult to predict what the final outcome will be. Even though PDD's are life long disorders, some children will do better than others and a sall proportion may "outgrow" some of the difficulties. Subtle changes, however, persist universally, even in the best of situations throughout life, and involve mostly social interaction skills and some obsessive-compulsive behaviors.
A simplified way of understanding the diagnosis of autism is looking at the PDD assessment scale questionnaire. In order to qualify for an autism diagnosis, one needs to have some behavioral features from each one of the three subgroups listed. This, of course, must be associated with a severe speech, social, or repetitive behavior impairment. A more comprehensive understanding of the condition and its diagnostic differentiation to the five different subgroups is provided by the DSM IV criteria for the autistic disorders.
The best treatment for autism must combine several disciplines - behavioral, developmental, academic, and medications. The treatment must be customized to each individual child's requirements and must follow the general principle of trying to achieve the best possible functional ability using the available resources as needed.
Behavioral modification may be very helpful. Children with autism may assume a wild behavior that if not corrected may lead to severe, life threatening behaviors that may require extreme measures. Early strict behavioral modifications may prevent future use of medications and institutionalization.
Parents must remember! If the family changes their normal behavior and assumes abnormal routines (in order to accommodate to the child's abnormal behaviors and prevent his temper tantrum), instead of the family teaching the child normal behavior, the entire family becomes behaviorally disrupted and the child with autism loses his chance to learn normal, socially accepted behavior.
Behavioral modification is effective if strictly applied and should be directed at correcting everything that is abnormal in the child, and that is potentially correctable. (See next section on behavioral modification.) Other behavioral and developmental treatment disciplines include ABA, speech therapy, occupational therapy, and special education.
Secretin is not medically approved for the treatment of autism. The medical literature currently contains a single standardized study by Dr. Sandler (New England Journal of Medicine, Dec. 1999) that has shown no benefit following a single dose of secretin injected to children with autism or pervasive developmental disorders. This is in complete contrast from another study by Dr. Horvath, a gastroenterologist, who gave secretin to three patients and described a "dramatic" improvement in the behavior of all his injected patients (Journal of Associated Academic Minor Phys. 1998).
So what is the truth? The truth, as in many circumstances, is probably somewhere in the middle.
My experience is based on injecting about 70 children affected by PDD with secretin according to the protocol suggested for pancreatic testing by the PDR (Physician's Desk Reference). My patients were closely followed with the autism rating scale and according to their parents' observation.
The esults indicated that although about 75% of parents reported some initial good results to the injection, only about 10% of the children have shown "dramatic" and "difficult to argue with" results. The duration of the effect is also variable in those who are very good responders. Some continue to gradually improve. An example is "patient B" who was a 4 * year old with PDD NOS and no language at all, extremely restless and hyperactive, who one month following the injection was able to sit and communicate in short sentences, was much calmer and had an improved eye contact following two more injections. He did very well and now does well in the regular education system.
Others such as "patient J" have a good response lasting for about 1 * to 4 months following the injections, after which the autistic feature starts reappearing. In the case of "patient J," he becomes restless, compulsive, and regresses into his own world and loses communication skills about 2 months following each injection. After receiving his secretin, he calms down, interacts better, and has less compulsive, ritualistic behavior. The changes are clearly noticeable including by the school personnel that are not informed about the injection schedule. "Patient J" received a total of 6 injections and is tolerating secretin without any side effects. Except for some occasional transient 5 to 10 minute rashes, no significant side effects were reported.
The issue of secretin must be explored further, with larger scale studies and specifically in those children who are "claimed responders," trying to inject them with placebo versus secretin to determine "true response." If true response is determined, further investigation of the mechanism of action of secretin in these particular children should be studied.
At this time secretin should not be recommended for the treatment of autism and parents shouldn't be given false hopes that this will cure the children from a devastating condition; however, the anecdotal experience is such that one may understand the desire and show compassion to those who want to try this treatment for their children. Long-term safety studies are also important. All these implications must be considered by those (physicians and parents) who want "to try" secretin or any other unusual treatment modality.
Autism Society of America
(800)-3AUTISM, extension 150
(301)-657-0881
Fax: (301)-657-0869
The mission of the Autism Society of America is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education, and research related to autism. Their extensive website provides education for families, information on local groups and resources and much more.
Center for the Study of Autism
The Center provides information about autism to parents and professionals, and conducts research on the efficacy of various therapeutic interventions. The website covers many topics of interest to parents, educators, and care providers.
Autism spectrum disorders (ASD), a broad continuum of brain illnesses that includes Asperger's syndrome, share comon genetic roots and essential clinical and behavioral features, although they differ in severity and age of onset. Autism, the most severe of these pervasive developmental disorders, typically begins in early childhood and impairs thinking, feeling, language, and the ability to relate to others.
From 1 to 6 in 1,000 Americans suffer from ASDs,1,2 with some recent studies citing dramatic apparent increases in prevalence in certain locales. Boys with the disorders outnumber girls three or four to one. Within the first few years of life, children with ASDs fail to develop normal social interaction and communication and show restricted, repetitive, or stereotyped behaviors and interests.
Families coping with ASDs are searching for answers about causes, diagnosis, prevention, and treatment. The National Institute of Mental Health's (NIMH) investment in autism-related science has quadrupled over the past 7 years from $9.4 million in FY 1997 to $36.2 million in FY 2002. The research is supported through grants and contracts with investigators at university medical centers and in the Institute's own laboratories in Bethesda, MD. In addition, new Institute initiatives aimed at advancing basic knowledge of brain development and genetics hold promise for understanding complex behavioral disorders like autism. NIMH's autism-related research ranges from efforts to improve awareness, diagnosis and treatment, to studies involving brain imaging, tissue banks, animal models, genetics, developmental neurobiology, and neuropsychology.
"How Autism was First Recognized"
Any treatment of the topic of childhood Autism must start with the pioneers Leo Kaner and Hans Asperger who, independently of each other, first published accounts of this disorder. These publications, Kanners's in 1943 and Asperger's in 1944, contained detailed case descriptions and also offered the first theoretical attempts to explain the disorder. Both authorities believed that there was present from birth a fundamental disturbance which gave rise to highly characteristic problems.b
It seems a remarkable coincidence that both choose the word 'autistic'in order to characterize the nature of the underlying disturbance. In fact, it is not really a coincidence, since the label had already been introduced by the eminent psychiatrist Eugen Bleuler in 1911. It originally referred to a basic disturbance in schizophrenia (another term coined by Bleuler), namely the narrowing of relationships to people and to the outside world, a narrowing so extreme that it seemed to exclude everything except the person's own self. This narrowing could be described as a withdrawal from the fabric of social life into the self. Hence the words 'autistic' and 'autism', from the Greek word autos meaning 'self'. Today they are applied almost exclusively to the developmental disorder that we here call Autism, with a capital A. I prefer to use the Autism rather than 'early infantile autism' or 'childhood autism', terms which imply some contrast to 'adult autism', and may wrongly suggest that one can grow out of it.
Both Kanner, working in Baltimore, and Asperger, working in Vienna, saw cases of strange children who has in common some fascinating features. Above all the children seemed to be unable to entertain normal affective relationships with people. In contrast to Bleuler's schizophrenia the disturbance appeared to have been there from the beginning.
Kanner's paper has become the most quoted in the whole literatureon Autism, Asperger's paper, writen in German, and published during the Second World War, was largely ignored. The belief has grown that Asperger described quite a different type of child, not to be confused with the one Kanner described. This belief has no basis, as we see when we look at the original papers. Asperger's definition of Autism or, as he called it, 'autistic psychopathy' is far wider than Kanner's.Asperger included cases that showed severeorganic damage and those that shaded into normality. Nowadays, the label 'Asperger's syndrome' tends to be reserved for the rare intelligent and highly verbal, near-normal autistic child.This is clearly not what Asperger intended, but having this special category has proved clinically useful. Kanner's syndromeis nowadays often used to indicate the child with a constellation of classic, 'nuclear' features, resembling in astonishing detail features that Kanner identified in his first,inspired description. Again, the category is clinically useful since it communicates a prototypical pattern.(...)"
Pages 7 and 8 of "Autism - Explaining the Enigma" (1989) by Uta Frith.
Definitions
Autism is a developmental disorder. It is not a kind of mental retardation, although many cases of Autism show an IQ below average. Nowadays the word Autism may be related to several syndromes. The symptoms vary widely, what explains why the Austim is currently referred to as a spectrum disorder. The Austim occurs in different forms, going from the highest to the lowest commitment, and inside these classes the disorder, that can be diagnosed as Autism, may also receive several other names concomitantly. The current Autism's diagnostic criteria are formalized in the norm DSM-IV, as we can read in the book by Uta Frith:
In international collaboration, experts have agreed to use certain behavioral criteria for diagnostics of Autism. These have been made explicit in published reference works. The most recent scheme is the one described in the Diagnostic and Statistical Manual (DSM-IV) of the American Psychiatric Association. A very similar diagnostic scheme is available in the International Classification of Diseases (ICD-10) issued by the World Health Organization.
Page 11 of "Autism - Explaining the Enigma" (1989) by Uta Frith.
DSM-IV
The most recent DSM-IV diagnostic criteria until now are:
DIAGNOSTIC CRITERIA FOR AUTISTIC DISORDER
Important: This is provided for information purposes only. An accurate diagnosis is the important first step in addressing any needs; such a diagnosis can only be performed by a qualified professional who's familiar with the individual's history.
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3).
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
a. 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.
b. failure to develop peer relationships appropriate to developmental level.
c. 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.
d. lack of social or emotional reciprocity.
2. Qualitative impairments in communication as manifested by at least one of the following:
a. delay in, or total lack of, the development of spoken language not accompanied by an attempt to compensate throughalternative modes of communication such as gesture or mime.
b. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
c. lack of varied, spontaneous, make-believe play or social imitative play appropriate to developmental level.
3. Restricted, repetitive and stereotyped patterns of behaviour, interests and activities, as manifested by at least one of the following:
a. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
b. apparently inflexible adherence to specific nonfunctional routines or rituals.
c. stereotyped and repetitive motor mannerisms eg: hand or finger flapping or twisting, or complex whole-body movements.
d. persistent preoccupation with parts of objects.
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
1. social interaction.
2. language as used in social communication.
3. symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
Incidence
As we could expect, the rates of incidence issued by the authorities in this matter vary, since each one assumes one different definition to the term 'autism', that corresponds to a different set of diagnostic criteria and, consequently, with certain embracing. There are studies that suppose a higher embracing of the term, which could start including people that who do not have the diagnostic today. However, the most accepted and published rates of incidence vary within a range of 5 to 15 cases in 10.000 individuals.
Nevertheless, independently of diagnostic criteria, it is assured that the syndrome reaches mainly male individuals, in a proportion of 4 autistic males to 1 female with the syndrome.
Is there a cure?
We can't say that there is a cure for the Autism. The Autistic may be treated and develop his/her abilities in a more intensive manner than a nondiagnosed people and then resemble very much to that people in some aspects of his/her behavior, but he/she will always have difficulty in the areas characteristically damaged by the syndrome like communication, social interaction, etc. According to the impairment level, the Autistic's possibilities to develop verbal communication, social integration, literacy and other skills will depend on the intensity and adequacy of the treatment. But it is intrinsic to him/her Autistic's condition that he/she has more difficulties in these areas than a "normal" people. However, it is not an impossible thing to surpass the barrier that isolates the Autistic from "our world". Although the Autistic has his/her difficulties, depending on the impairment level, he/she can learn the "common" behavior standards, exercise his/her citizenship, acquire knowledge and integrate himself/herself to the society in a satisfactory way. This is exactly the work developed by the AMA.
Autism experts want to see more research into mercury levels
Children who develop autism may do so because they have problems processing the toxic metal mercury, researchers have suggested.
US researchers looked at mercury levels in the babyhair of children who later developed autism, a developmental disability that affects how a person communicates and interacts with other people.
They were found to have far lower levels of mercury than children who did not have the condition, according to New Scientist magazine.
The researchers say this could be because autistic children's bodies cannot make use of metals such as mercury properly, or because they have trouble excreting the metal from their body.
The findings of this study are intriguing
National Autism Society spokeswoman
Mercury is suspected by some to be a cause of autism.
A group of parents in the US and Canada are suing health authorities because they believe thimerosal, a mercury-based preservative used in vaccines, could have caused their children's autism.
The MMR vaccine, which some parents fear is linked to autism, does not contain thimerosal.
Baby hair
Experts are divided over whether there could be a link.
Some say more studies need to be carried out before a link between mercury and autism can be confirmed.
But others, such as Louisiana-based Dr Amy Holmes, who carried out this latest research, believe there is a causal link.
Dr Holmes obtained baby hair cuttings taken which had been taken when children were around 18 months old.
She analysed mercury levels in cuttings from 94 autistic children and 45 other children
The average level of mercury in baby hair of children later diagnosed as autistic was 0.47 parts per million, compared to 3.63 per million in the other children.
The more severe the children's autism, the lower the mercury levels found.
Deficiencies
Most of the mercury came from the children's mothers in the form of fillings, injections containing the thimerosal, or through eating a lot of fish.
In the group of non-autistic children, mercury levels rose in line with their mother's exposure.
But levels in the baby hair of the autistic children were low even when their mother's exposure was high.
The researchers say one explanation could be that autistic children's bodies are unable to make use of metals properly, so they could also be deficient in metals which are needed for brain development such as zinc, iron and copper.
Alternatively, they suggest some children might have problems excreting mercury.
Most of the metal is excreted through urine and faeces.
However the researchers suggest that the lack of mercury in the children's hair could be due to the metal being retained in cells, rather than getting into the blood.
'Logical leap'
Some experts say the link is plausible.
Professor Simon Baron Cohen of Cambridge University, said: "This kind of gene-environment interaction is not incompatible with the known heritability [genetic factors] of autism.
"If these results hold up, metal studies on the brain could be revealing."
But Dr Emmanuel Dicicco-Bloom, a child neurologist at the Robert Wood Johnson Medical School in New York warn more evidence is needed before a link between mercury processing and autism can be confirmed.
He told New Scientist it was a big logical leap, not justified by the evidence.
A spokeswoman for the UK's National Autistic Society told BBC News Online: "The findings of this study are intriguing and we would encourage further investigation into what factors might be causing this complex disorder."
The research is due to be published in the International Journal of Toxicology in September.
AAPEP(related to "PEP", see below)
AAC "Assistive Augmentative Communication"
A speech-language therapists' term for communication using a picture board or recorded messages activated by buttons, etc.
ABA "Applied Behavior Analysis"
Acronym in common use by adherents of some behavioral techniques to refer to a kind of careful analysis and tracking of behavior including its cues and consequences.
ABC "Applied Behavior Consultants"
Organization centered in Sacramento sometimes discussed on the AUTISM mailing list.
ABC "Autism Behavior Checklist"
Diagnostic device for autism.
AC "Autistics and cousins"
people with autism and those who may not be formally diagnosed but may have some elements of atypical thinking. As far as I know, this usage is confined to the Autism list.
ADA "Americans with Disabilities Act"
USA law that ensures rights of persons with disabilities with regard to employment and other issues.
Adaptive PE "Adaptive Physical Education"
ADD "Attention Deficit Disorder" (see "Similar Conditions")
ADHD "Attention Deficit Hyperactivity Disorder" (see "Similar Conditions")
ADI "Autism Diagnostic Interview"
a diagnostic scale for autism being developed by the Medical Research Council in London. Fairly technical: more precise than CARS.
ADOS "Autism Diagnostic Observation Scale"
(or "Autism Diagnostic Observation Schedule"?) Fairly technical test.
AGRE "Autism Genetic Resource Exchange"
Program run by CAN foundation (see "Initiatives") to collect & review DNA samples.
AIA Network "Autism, Intolerance & Allergy Network
(see "Feingold Association" under "Organizations and Services")
AIT "Auditory Integration Training" (see "Treatment")
ASLA "Autism Society of America, Los Angeles Chapter"
They hold an annual conference often referred to as the ASLA conference.
Analog condition (conditioning?)
Term for some behavioral methods such as the Lovaas method used by developers of the Natural Language Paradigm.
ANC "Autism National Committee" (see "Organizations and Services")
ANDI "Autism Network for Dietary Intervention" (see "Initiatives")
APD
aphasia
loss of ability to use or understand words.
apraxia
a neurologically-based disorder which occurs in adults, often (but not exclusively) as a consequence of stroke. The person has difficult sequencing movements in the service of a goal. e.g., he may have the ability to raise his arm and to wave his hand, but not when he consciously intends to do so. Apraxia may be specific to speech (e.g., "apraxia of speech") or to the movement of other body parts (e.g., "limb apraxia").
apraxia of speech (see definition of "apraxia")
apraxic
having to do with apraxia or a person with apraxia.
ARI "Autism Research Institute" (see "Initiatives")
ARRI "Autism Research Review International" (see "Bibliography")
AS "Asperger's Syndrome"
ASA "Autism Society of America" (see "Organizations and Services")
ASD "Autistic Spectrum Disorders" (see below)
ASL "American Sign Language"
atypical autism
A general term for conditions that are close to but don't quite fit the set of conditions or autism or other specific conditions. See "PDD-NOS" under "Similar Conditions".
augmentative communication
? (I think: communication augmented by a device, see for example, PECS)
AUTCOM "Autism National Committee" (see "Organizations and Services")
Autism Behavior Checklist
?
Autistic savant
an autistic individual who displays incredible aptitude for one or two skills.
Autistic Spectrum Disorders
Term that encompasses autism and similiar disorders. More specifically, the following five disorders listed in DSM-IV: Autistic Disorder, Aspergers Disorder, PDD-NOS, Childhood Disintegrative Disorder, and Retts Disorder.
Aversives
Behavioral methods employing punishment rather than positive reinforcement. Often use physical pain. (see "Treatment" and "Controversies")
Bayley
?
BRI "Behavioral Research Institute" see JRC.
CAN "Cure Autism Now" (see "Initiatives")
Canon Communicator (see "Facilitated Communication" above under "Educational Methods")
CARS "Childhood Autism Rating Scale"
A test developed at TEACCH to diagnose autism. The child is rated in 15 areas on a scale up to 4 yielding a total up to 60, than ranges are considered to be non-autistic, autistic, and severely autistic. For reference, see entry on Schopler article in section "Bibliography" below.
CBCL "Achenbach Childhood Behavior Checklist"
diagnostic device.
CDC "Center for Disease Control"
US Government agency.
CF or c/f &uot;casein free"
CFF "Community Care Facility"
CHAT "Checklist for Autism in Toddlers"
A checklist to by used by General Practitioners at 18 months to see if a child has Autism. Described in Baron-Cohen S; Allen J; Gillberg C. "Can autism be detected at 18 months? The needle, the haystack, and the CHAT." British Journal of Psychiatry, 1992 Dec, 161:839-43. (UI: 93130306)
chat
On the autism and other mailing lists, the Internet term "chat" is used to refer to Internet chatting, i.e. using software that allows you to hold online conversations by typing sentences that will be read by a group. There are a number of chat groups dedicated to autism: see the term "IRC" and see "Initiatives" section below.
communications notebook
a notebook sent with a student (typically a special education student or young student) to and from school by which parents and teachers maintain (possibly) daily communication.
Cranio-Sacral Therapy
(see "Cranial Sacral" Therapy under "Treatment")
Cluster
Used to label an unusually large number of occurrances of a disease or condition in one place. An "autism cluster" would be an unusually large number of cases of autism in (perhaps) a single locality. Clusters constitute evidence in the search for causes of diseases and conditions. In early 1999, an autism cluster was reported in the Brick Township of New Jersey.
DAN "Defeat Autism Now" (see "Initiatives")
Also "DAN!".
DAN Doctor
Also "DAN! Doctor". A physician who subscribes to the DAN protocol and attended a DAN Conference. There is a list of such doctors at http://www.autism.com/ari/danlist.html.
DAN Protocol
Also "DAN! Protocol". A protocol for the assessment of the underlying disorders that is causing the autism. It is the result of the DAN conferences.
DAS "Developmental Apraxia of Speech" (see "Treatment")
DD "Developmental Disabilities"
DH "Developmentally Handicapped"
Discrete Trial Methods
term used for some behavioral methods, e.g. the Lovaas Method (see "Behavioral Therapy" under "Treatment")
DSS "Department of Social Services"
DTT "Discrete Trial Training"
(Note: I've also seen it refered to as "Discrete Trial Therapy" and "Discrete Trial Teaching") I've seen the term applied to Lovaas's ABA-based method for treating autistic children, and I've seen it used as a term for the "drilling" aspect of ABA. The term is also often used in a less specific way, as a synonym for ABA. (see "Behavioral Therapy" under "Treatment")
DMAE "dimethyl aminoethanol" (see "Treatment")
DMG "dimethylglycine" (see "Treatment")
DSM-III, DSM-III-R, & DSM-IV "Diagnostic and Statistical Manual" (see "Books" in the "Bibliography" section below)
DTT "Discrete Trial Training" (see "Treatment")
DVD "Developmental Verbal Dyspraxia" (see "Similar Conditions")
Dyspraxia
Term for a neurological symptom: a proble with "praxis", i.e. planning, initiating, sequencing, and carrying out volitional movements. I think "dyspraxia" and "apraxia" mean the same thing, having been coined in different professional circles. See the variants of apraxia and dyspraxia under "Similar Conditions".
E-2 or E2
Bernard Rimland's check list from the Autism Research Institute (see "Organizations and Services"). It functions as an autism rating device, and is basically being used to gather data for study.
EAHCA "The Education for All Handicapped Children Act
See "Public Law 94-142".
echolalia
Repeating back something said to you. Delayed Echolalia is repeating it later. Both behaviors are found in many autistics. Functional echolalia is using a quoted phrase in a way that has shared meaning, for example, a child who sings the Barney jingle to ask for a Barney videotape, or says "Get your shoes and socks" to ask to go outside.
EEG "Electroencephalogram"
A test consisting of recording brainwaves as picked up by electrodes. It is used to identify seizures. It is also used to differentiate LKS from other disorders in with autistic symtoms.
ELAP "Early Learning Accomplishment Profile"
evaluation checklist for children used by some professionals (Cost $325 from Kaplan Catalog at 1-800-334-2014).
EFA "Essential Fatty Acid"
Evaluating Acquired Skills in Communication, Revised Edition
?
Face Blindness
See "Prosopagnosia" above under "Similar Conditions".
FAPE "Free and Appropriate Education"
FC or F/C "Facilitated Communication" (see "Educational Methods")
FCT "Facilitated Communication Training"
A variant of the term "Facilitated Communiction" (see "Educational Methods")
FEAT "Families for Early Autism Treatment"
See "Organization".
GARS "Gilliam Autism Rating Scale"
GF or g/f "gluten free"
HFA "High-functioning Autistic" or "High-functioning Autism"
Higashi
USA Higashi is a school for autistic children located in Boston. I believe it is modeled after a similar school in Japan. (see "Initiatives")
Hyperlexyia
Ability to read at an early age, but often without linking the words to what they words mean. (see "Similar Conditions")
Hypotonia
Low muscle tone.
ICD-10
International Classification of Diseases 10th Edition
ICF "Intermediate Care Facility"
IDEA "Individuals with Disabilities Act"
A US Law mandating the "Free and Public Education" a.k.a. FAPE of all persons with disabilities between the ages of 3 and 21.
IEP "Individualized Educational Plan" more visit http://theglp.info/resources/sec-504iep
IFSP "Individualized Family Service Plan"
IHP "Individualized Habilitation Program"
IgG
An antibody involvedin intraveneous immunoglobulin (see "Treatment")
IGIV or IgIV "intravenous immunoglobulin" (see "Treatment")
IVIG
Same as IGIV.
IVIgG "intravenous gamma globulin" (see "Treatment")
IMHO "In My Humble Opinion"
this abbreviation is sometimes used on the Autism mailing list just as it is used on lots of lists and newsgroups.
Inclusion (see "Mainstreaming" under "Educational Methods")
IPP "Individual Program Plan"
IRC "Internet Relay Chat"
the term has nothing to do with autism per se, but refers to an Internet service to allow people to type messages to each other. The term is used on the AUTISM mailing list to refer to the IRC regular discussions on the subject of Autism (see section below "Initiatives").
JRC "Judge Rotenberg Center"
a facility in Providence RI run by Matthew Israel, a follower of B.F. Skinner. Extremely controversial due to its use of aversives (electro shock device, ammonia water sprays in face etc.) for self injurious behaviors and noncompliance. The state of Massachusetts has been unable to close it, despite the death of a resident during the administration of a punishment. It was profiled in a television documentary on Connie Chung's _Eye to Eye_ which included footage taken by a hidden camera of various punishments being administered to residents. The JRC was formerly called the Behavioral Research Institute (BRI).
Ketogenic diet
restricted diet used to prevent epileptic seizures.
LCSW "Licensed Clinical Social Worker"
LD "Learning Disabled"
LFA "Low-functioning Autistic" or "Low-functioning Autism"
LKS "Landau-Kleffner Syndrome" (see "Similar Conditions")
Lovaas (see "Behavioral Therapy" above under "Treatment")
LRE "Least Restrictive Environment"
LSH "Language, Speech and Hearing Specialist"
Mainstreaming
Placement of a disabled child with non-disabled peers in a regular classroom.
MEG
? (type of EEG?)
MR "Mentally Retarded" or "Mental Retardation"
MRI "Magnetic Resonance Imaging"
A diagnostic tool in the sense of an X-ray machine or Cat scanner, which like them, creates internal images of the selected parts of the body. Rather than sending X-rays through the body, it builds its image data by testing the magnetism of the body tissue.
MSDD "MultiSystem Developmental Disorder"
Stanley Greenspan's term for an autistic-like set of symptoms.
NAS "National Autistic Society" (see "Organizations and Services").
Neuroleptic
A class of drug that includes Haldol and Risperdal (see "Treatment").
Neurotypical
(see NT)
NICHCY "National Information Center for Children and Youth with Disabilities"
NIH "National Institutes of Health"
U.S. government agency.
NLP "Natural Language Paradigm" (see "Treatment").
Note: NLP isalso the acronym for something else: "Neuro-Linguistic Programming", and partly for this reason, "Natural Language Paradigm" has been renamed "Pivotal Response Training".
NIMH "National Institutes for Mental Health"
NT "Neurologically Typical" or for short, "Neuro-typical" or "Neurotypical"
this term is used in discussions of autistic people to refer to people who are not autistic.
NOS "Not Otherwise Specified" (see "PDD-NOS")
OCD "Obsessive Compulsive Disorder" (see "Similar Conditions")
OCR "Office of Civil Rights"
Ocytocin
a neurotransmitter.
ODD "Oppositional Defiant Disorder"
OT "Occupational Therapy" or "Occupational Therapist"
Like Physical Therapy only deals with fine motor skills, e.g. picking up small objects like coins. Occupational therapists would be the people who provide Sensory Integration Therapy (see "Treatment")
PANDAS "Pediatric Autoimmune Disorders Associated with Strep"
PDD "Pervasive Development Disorder" (see "Similar Conditions")
PDD-NOS or PDD/NOS "Pervasive Development Disorder--Not Otherwise Specified" (see "Similar Conditions")
PECS "Picture Exchange Communication System" (See "Educational Methods")
PEP "psycho-educational profile" (see "PEP-R")
PEP-R "psycho-educational profile-revised"
a test designed (among other things?) to assess the presence of autism and point toward treatment strategies and some areas of need.
perserveration
obsessive-like continued immediate repetition of a behavior.
kica
ingestion of nonfood items.
PET(type of scan)
PPT
proprioceptive
PRT "Pivotal Response Training" (see "Treatment")
PT "Physical Therapy"
Public Law 94-142
Also known as The Education for All Handicapped Children Act of 1975 (EAHCA). USA Federal law providing funds to states that maintain certain standards in their education of handicapped children, i.e. providing a free and appropriate education in a least restrictive environment. I believe IDEA is the more recent version of this law.
Purkinje cells
A type of cell in the brain. There is a theory that a lack of Purkinje cells is related to autism. This idea came from reports of autopsies on autistic people.
QEEG
? (type of EEG?)
refrigerator mother
Slang jargon phrase used to describe mothers of autistic children who act coldly. The phrase was used in descriptions of the Freudian psychological theory of the cause of (infantile) autism. See section "History".
Residual state autism (actually, "infantile autism
residual state") A DSM-III (1980) category for individuals who once met the criteria for autism but no longer do so but may retain some residual traits. DSM-IV (1987) dropped the category.
Secretin
A hormone used to diagnose digestive problems (see "Treatment")
Snsorimotor
Pertaining to brain activity other than automatic functions (respiration, circulation, sleep) or cognition. Sensorimotor activity includes voluntary movement and senses like sight touch and hearing.
Seratonin
A neurotransmitter, i.e. brain chemical that plays a part in communication within the nervous system. It has been noted that the level of seratonin measured in autistic people is sometimes higher than that in typical people. Some of the drugs that have been tested for use with autistic people have been drugs already known to affect seratonin.
SI "Sensory Integration" (see "Educational Methods")
SI also sometimes stands for "Speech Impairment".
SIB "Self-Injurious Behavior"
SIT "Sensory Integration Therapy" (see "Educational Methods")
SLP or S-LP "Speech-Language Pathologist"
Son Rise
The name of a book by Barry Neil Kaufman about his autistic son (see section on accounts of autistic people under "Popular Attitudes") and the name of a program for treating/educating autistic children that Kaufman started (see "Initiatives").
SRRI "selective serotonin reuptake inhibitor" (see "Treatment")
SSI-DC "Supplimental Security Income-Disabled Child"
US program.
SSS "Scotopic Sensitivity Syndrome" (see "Similar Conditions")
stim
(e.g. stimming) short for "self-stimulation", a term for behaviors whose sole purpose appears to be to stimulate ones own senses. An example is rocking ones body. Many people with autism report that some 'self stims' may serve a regulatory function for them (ie. calming, adding concentration, shutting out an overwhelming sound). Other examples: hand-flapping, toe-walking, spinning, echolalia.
TEACCH "Treatment and Education of Autistic and Related Communication Handicapped Children" (see "Initiatives")
Theory of mind hypothesis
(see section "Theories and Causes" for a description)
titers
?
TOM "Theory of Mind"
TS "Tourette Syndrome" (see "Similar Conditions")
The initials "TS" have also been used for another condition, "Tuberous Sclerosis" (see "Similar Conditions").
The Welch Method (Welsh Method?; see "Holding Therapy" under "Educational Methods")
Upledger Cranio-Sacral Therapy
see "Cranial Sacral Therapy" under "Treatment". Upledger is the name of a person who sells training in the methodology to therapists.
Vineland Adaptive Behavior Scales
test sometimes used to evaluate students possibly requiring special education.
Helen Exley
Music is a powerful medium for communication. It is used in every culture as a means of entertainment and leisure, but also as a means of expression of ideas and emotions. As Gaston (1968) points out, "No culture, no tribe, has ever been satisfied with only the sounds of nature." Even the self confessed 'tone-deaf' cn tease out the emotions underpinning tribal dance music or the subtleties of Debussy's Arabesque.
The word music derives from the Greek 'muses' which, according to mythology, were the Goddesses that inspired poets, painters and musicians. Since Roman times, it has been known that music can affect the physical functions of the body, most notably pulse and rate of respiration.
"With evolving technology, it has been shown that music can also influence the brain rhythm, metabolic rate and muscular energy." (Gaston 1968, and, Senior and Croal 1993).
"Therapeutically, it is also claimed that music can reduce anxiety and increase relaxation." Guzzetta (1989)
Quoting Sylvia Lynsay, Director of the Council for Music in Hospitals, "Music is an incomparable means of communication. People often relate to music when words have lost their meaning." This view is upheld by Carlson and Gingland (1962) who talk specifically of the preciousness of music as a medium for connecting with people with learning disabilities in that there are very few who cannot or do not respond to music in some way.
So why does music have such a profound effect ? As babies we are exposed to the rhythm of the blood flow in our mother's womb. In early years, mothers use music instinctively to communicate with and reassure their children. The slow rhythm of a lullaby instils a sense of predictability. This rhythmic predictability continues through nursery rhymes and into popular and rock music.
In 531 BC, Pythagoras theorised that there was a basic relationship between musical harmony and mathematics, or in other words, the predictability we attach to number can also be attached to music. This begins to explain why people with an autistic spectrum disorder may be able to precisely replicate a particular tune, or part of a tune, having only heard it a few times. This predictability may invoke a feeling of security, which they may wish to replicate over and over again. The acceptance of repetitive chanting of mantras to instil and maintain a feeling of calmness in other cultures, lends some credence to this theory.
Despite the growing body of literature that accepts that music therapy is helpful both in terms of physiological and psychological responses, it may be difficult to access the services of a music therapist, either financially or practically - especially if you live in a rural community. Therefore, within the course of my work, I do not underestimated the value of music therapy, but also acknowledge that music can be employed therapeutically by parents and carers with an interest in this area.
When using music therapeutically with children with autism, during the course of my work, I undertake the following steps:
Firstly, I undertake an assessment of the child's cognitive and musical abilities and tastes, carried out in order to identify particular aims. There may, of course, be several aims for the sessions which would take place on a regular scheduled basis. The aims are determined according to the needs of the individual and, therefore, are very diverse in nature. There are, however, a few key areas which I regularly work on with a number of individuals.
Opening and Closing the Session
I indicate that the session has begun by using 'hellos' as a verbal cue and by presenting a box containing the instruments or tape machine being usedfor that particular session. This powerful visual cue is also used at the end of the session as we refill the box and put the lid on to indicate that we are finished. It goes without saying that, if the child uses an additional visual communication system, it is also operated in the appropriate way.
Acknowledging the Child's Mood
The next stage is to acknowledge the child's mood and to indicate acceptance of it by playing (this can be pre-recorded), or singing, a piece of music that matches the mood (either a set-piece or an improvised piece).
For example, if the child was agitated, the session could commence with restless music which was less agitated than the client. This is referred to by Bonny and Savery (1973) as the iso principle. Allow the child to express their agitation by enabling them to perhaps bang on a drum or march around the room whilst crashing symbols or sing out repetitive phrases. Then, throughout the course of the session, move towards quieter, more harmonic music with a steady rhythm. This principle can obviously be reversed in order that a passive, less responsive mood can be lifted.
Increasing Concentration
During a series of sessions difficulties such as concentration can be addressed by starting with demands that you know will be achievable and giving lots of praise. Then, increasing demands, both in terms of expected achievements but also in the time frame of the sessions. Predictability within the sessions also decreases anxiety and results in progress being made more rapidly. However, we should acknowledge that we all have our off days and that a degree of flexibility is required.
Developing Eye Contact
Eye contact can also be built up by reducing stress and increasing predictability, and by the use of 'self in relation to the instrument' ie. if the client has connected with a particular instrument, I use that instrument in proximity to my face (if it is safe to do so). Musical rewards, for compliance with demands for eye contact, can also be a useful tool.
Some children can be taught to wait through the use of counting skills. It is just as easy to count notes as it is to count numbers. This can start with '1,2,3 ... go' followed by an additional visual cue for the child before he embarks on the desired tasks. It is also a good precursor to 'stop' and to developing turn taking skills.
Building Self-confidence
For more able children an appropriate aim might be to build on their natural sense of rhythm or sense of harmony to increase self-confidence. This involves teasing out musical abilities, giving lots of praise and stretching the child's skills by, for example, composing music. This is not as difficult as it sounds. If the child doesn't read music you can have a series of coloured cardboard shapes that relate to specific notes on a key board - these can be manipulated until the composition feels right to the composer. They can then be transferred to a permanent record of the composition by the use of stamps or sponge paints - both of which are fun and an additional shared experience. Another fun method of composition for an individual who has a higher degree of musical ability would be to plot stickers onto staves.
Of course, the power of enjoying listening to or playing music as a shared experience merely for pleasure must never be undervalued. The connections made during such an experince are deeply moving and the feelings stimulated can have a real carry over effect once the music has ended.
In conclusion, music has a unique ability to provide diversion, stimulation and entertainment. It also has the capability to make deep connections when used creatively. Taking a ride on this metaphorical vehicle of empowerment can lead to enhance self esteem and personal growth.
References
Carlson and Gingland (1962) Play Activities for the Retarded Child, London: Bailliere Tindell
Guzetta CA (1989) Effects of Relaxation and Music Therapy on Patients in a Coronary Care Unit with Presumptive Acute Myocardial Infarction, Heart & Lung 18(6): 609-616
Senior P, Croall J (1993) Helping to Heal - The Arts in Health Care, London:Calouste Gulbenkian Foundation
Bonny H, Savery L (1973) Music and Your Mind, New York: Harper and Row
Further Reading
Steer A (1993) Creativity and Self-Advocacy
Wood M (1983) Music for Mentally Handicapped People, London: Souvenir Press
Peplay HE (1988) The Art and Science of Nursing - Similarities, Difference and Relation, Nursing Science Quarterly 1(I): 8-15
Lange SP (1990) Using the Arts in Clinical Practice, The Caring Imperative in Education, New York: National League for Nursing Press
Campbell D (1984) Introduction to the Musical Brain, St Louis: Magna Music Baton 1984
Mernam AP (1964) The Anthropology of Music, Chicago: Northwestern University Press
Metzger L (1986) The Selection of Music for Adolescents and Young Adults in a Psychiatric Facility, Music Therapy Perspectives 3:20-23
Utah researchers confirm chromosome may harbor autism gene
Data strikingly similar to Finnish studies
Using technology that allows DNA from thousands of genes to be collected and surveyed on a 3 x 1 -inch chip, University of Utah medical researchers have confirmed that a region on a single chromosome probably harbors a gene that causes autism. The researchers at the U School of Medicine made the finding by tracing variations in the DNA of an extended Utah family that has a high occurrence of the disorder and whose members are descended from one couple.
As part of the study, the researchers also ruled out one gene that appeared to be a good candidate for being linked to autism. They're now looking at other genes for a connection to the disorder.
Published in Human Heredity online, the study is part of the Utah Autism Research Project. The researchers are interested in finding more families with a history of autism to join the study.
The just-published research confirms Finnish studies of families that linked autism to the same region on chromosome 3, according to principal author Hilary Coon, Ph.D., research associate professor of psychiatry. In fact, the results of the U of U research were surprisingly similar to the Finnish studies, Coon said.
"It was remarkable to confirm the Finnish studies," she said. "Our results were so close to their evidence, we thought it was important."
Autism is a behavioral disorder that strikes before age 3 and is characterized by impaired ability in social interactions and communication. Those with autism also display repetitive behaviors and interests.
The study involved 31 members of a family of Northern European ancestry, seven of whom have autism or an autism-related disorder. The family members are part of the Utah Population Database, a computerized set of the genealogies of 170,000 Utah families comprising 1.6 million people. Information on some families goes back to the state's pioneer founders.
The researchers used a gene chip similar to a microarray to search for genetic markers of autism.
They used a coated glass chip from Affymetrix, Inc. This chip has 10,000 short segments of DNA with known gene sequence variations, called single nucleotide polymorphisms (SNPs), attached to 3/8 by 3/8-inch area. The DNA strands of the family members were broken up and then bonded to the DNA on the chip, allowing researchers to compare the variations in the SNPs of the different DNA on an extremely fine scale.
The chance of the same variants of SNPs in a particular region on a chromosome being passed through several generations from a founding couple to multiple affected family members is slight. When such identical blocks of SNPs are found, the chromosomal region often is a good candidate for being linked to a disease.
Other studies, including the Finnish ones, have found a high degree of evidence linking chromosome 3 to autism, so Coon and the other U researchers began their search on that chromosome. The first region of the chromosome they looked at contained 106 SNPs, 70 of which strongly indicated a gene in that region being linked to autism.
One gene, FXR1, appeared to be a likely candidate for a link to autism. FXR1 is similar to the X-chromosome Fragile X gene, FMR1. Mutations in FMR1 cause Fragile X Syndrome, an inherited condition that can cause mental impairments ranging from learning disabilities to severe cognitive problems. Fragile X syndrome has been shown to overlap with autism, and because FXR1 is similar to the gene that causes the syndrome, U researchers suspected FXR1 might be linked to autism. But after analyzing the entire coding sequence of FXR1, the researchers found no alterations in the gene likely to contribute to autism.
Based on statistical evidence, they're now looking at other genes. But evidence that a gene on a particular region of chromosome 3 is linked to the disorder doesn't preclude other genes from being a cause of autism, according to Coon. All in all, the researchers have a daunting search ahead of them.
"We're just looking for the needle in the haystack," Coon said.
Along with the original family, the U researchers are studying two more families with autism in some members, and they'd like to find others in which the disorder occurs. Large and small families with individual or multiple cases of autism are welcome to join. Those interested can call (801) 585-9098.
Other authors of the study are: Nori Matsunami, Jeff Stevens, Judith S. Miller, Ph.D, assistant professor of psychiatry, and Carmen Pingree, all with the Neurodevelopmental Genetics Project in the Department of Psychiatry; Nicola J. Camp, Ph.D., assistant professor of medical informatics; Alun Thomas, Ph.D., professor of medical informatics; Janet E. Lainhart, M.D., associate professor of psychiatry; Mark F. Leppert, professor and chair of Human Genetics; and William M. McMahon, M.D., professor of pychiatry and principal investigator of the Utah Autism Research Project.
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The University of Utah Health Sciences Center is internationally regarded for its research and clinical expertise in the health sciences. Through its four major colleges --the School of Medicine; College of Pharmacy; College of Nursing; and College of Health--the Health Sciences Center conducts leading-edge research in cancer, genetics, pharmaceutical sciences, and numerous other areas of medicine. The Health Sciences Center also is the major training ground for Utah's physicians, pharmacists, nurses, therapists, and other health-care professionals.
Contact:
Hilary Coon, Ph.D, 801-585-3068
William M. McMahon, M.D.,
801-585-7781
Phil Sahm, Office of Public Affairs, 801-581-2517
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SHREWSBURY, UK: Shropshire's former school for the blind will re-open in February 2006 following work costing more than 5 million to transform it into an education centre for autism.
The former Condover School for the Blind, near Shrewsbury, was bought in February 2005 for an undisclosed sum by Priory, the group that runs rehab clinics used by celebrities.
The 16th-century hall has now been restored to its former glory by Priory Education Services, with additional work to spruce up the grounds.
Condover Hall will provide education for children with autism, with a separate college for adolescents who have Asperger's syndrome.
The autism unit will be people aged four to 19, and the Asperger's unit for those aged 16 to 23.
Stephen Bradshaw, managing director of Priory Schools, said the school would open in February, with the college due to open in April. "We have got a few planning issues and we are still waiting for a response back from the council about the piece of land that we have pledged for a new playground," he said. "But the school will open in February and the college in April."
The refurbishment includes a new single-storey, 10-bedroom accommodation at the site and a new sports hall. The school will employ 150 staff.
(Source: Shropshire Star, January 10, 2006)
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by HIRAN RATNAYAKE
The News Journal
01/17/2006
Jacoby Dent refused to get on an elevator two years ago. He'd kick burgers and drinks off tables at the mall food court. He'd pound his head against the floor and claw his face with his fingernails.
His parents, Greenwood residents Joe and Lisa Dent, couldn't cut his fingernails, couldn't cut his hair, couldn't understand him, kiss him or touch him.
Jacoby, now 4, was diagnosed with autism when he was 2. In April 2004, his parents put him on chelation, a treatment that removes heavy metals from the bloodstream, usually through urine or stool. The Food & Drug Administration considers chelation a risky treatment for autism, but the Dents say it has vastly improved Jacoby's and the family's lives. Jacoby, who hasn't used the treatment since September, also was given other remedies.
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But Lisa Dent said "chelation was the key."
"One month after chelation, there were noticeable differences," she said. "He started allowing us to get his hair cut and his nails clipped. The speech came back. The first birthday he recognized was that year he started chelation."
Because of chelation's success, Dent said her son now wouldn't meet the criteria to be considered autistic.
She resents being called a desperate parent, a phrase that has been used to describe adults who use chelation to treat their autistic children.
It's a disease many parents believe is caused by a high amount of heavy metals in the body.
While the FDA has approved chelation for treatment of lead and heavy metal poisoning, the agency has not approved it to treat autism because it is considered risky and ineffective. A coroner from the Pittsburgh area recently ruled that the Aug. 23 death of a 5-year-old autistic boy was the result of intravenous chelation therapy. The boy died from cardiac arrest.
Newark resident Beverly Greene gives her 9-year-old son, Wesley, chelation transdermally, or through the skin. Insurance doesn't cover his treatments. She pays $172 per bottle of the liquid cream, which lasts two months and is applied to Wesley's forearm.
The first thing Greene noticed once Wesley started chelation was a drop in the frequency of his seizures.
"It's not controversial," she said. "Just because someone doesn't understand something doesn't mean it's controversial."
Finding the problem's source
Autism is a term used to refer to a group of neurologically-based developmental disorders in which individuals have trouble with social skills. People who have autism have a penchant for repetitive behaviors and interests. Typically diagnosed during toddler years, autism occurs in all races.
Some people believe the disease is caused by vaccines preserved with thimerosal, which contains mercury.
In chelation, a synthetic solution known as EDTA (ethylenediaminetetraacetic acid) is introduced into the bloodstream to remove heavy metals such as copper, lead and mercury. The treatment is typically administered intravenously, orally, rectally or transdermally.
In 1999, the FDA -- despite finding no harm from thimerosal -- requested that it be reduced or eliminated from vaccines as a precautionary measure. On its Web site, the Centers for Disease Control and Prevention reports that none of the vaccines used in the United States to protect preschool children against infectious diseases contains thimerosal, though it warns some flu vaccines do.
But Bernard Rimland, director of the Autism Research Institute, said timerosal is still in some vaccines and can be linked to autism.
The institute, headquartered in San Diego, supports the work of Defeat Autism Now doctors, many of whom prescribe chelation treatments. Both Jacoby Dent and Wesley Greene were seen by DAN doctors.
"Among knowledgeable people, chelation is not controversial," said Rimland, who is also a research psychologist. "Ignorant people have great hostility to it. One child died while undergoing chelation treatment, but he's the only death that has been reported for 50 years."
Rimland said a highly organized effort by the drug industry has prevented the FDA from recognizing that mercury in vaccines has led to autism.
"If they recognized it, Congress would ask them why they used it without safety testing," he said.
Phone calls to the FDA for this story were not returned.
Risky treatment
Dr. Adrian Sandler, medical director of Olson Huff Center at the Mission Children's Hospital in Asheville, N.C., called Rimland's accusation "nonsense."
"Any researcher can develop a research protocol and get that study funded without having to do it through a drug company," he said. "The reason that the FDA hasn't approved [chelation] is because there is absolutely no published peer-reviewed research that shows chelation therapy has any role to play in autism."
Sandler co-authored an American Academy of Pediatrics article that said chelation is neither safe nor effective as an autism treatment. He said children could die from either a severe allergic reaction or severe liver damage stemming from chelation.
He pointed to a 2004 panel by the Institute of Medicine, a federal scientific advisory agency under the National Academy of Sciences, that reviewed several reports on the issue and rejected the idea that vaccines containing thimerosal caused autism. Parents who have seen dramatic changes in their children after chelation treatment may have fallen under the spell of the placebo effect, Sandler said.
"When a parent starts something new, they want to know if it's helping and they start engaging their children more," he said. "That change in parent behavior can lead to improvements."
The debate has not swayed Greene, who plans to continue using chelation on her son.
"I have no choice," she said. "Autism has robbed Wesley of his childhood, and I want to see him get it back."
Contact Hiran Ratnayake at 324-2547 or hratnayake@delawareonline.com.
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Newswise - Non-coding regions of the genome - those that don't code for proteins - are now known to include important elements that regulate gene activity. Among those elements are microRNAs, tiny, recently discovered RNA molecules that suppress gene expression. Increasing evidence indicates a role for microRNAs in the developing nervous system, and researchers from Children's Hospital Boston now demonstrate that one microRA affects the development of synapses - the points of communication between brain cells that underlie learning and memory. The findings appear in the January 19th issue of Nature.
"This paper provides the first evidence that microRNAs have a role at the synapse, allowing for a new level of regulation of gene expression," says senior author Michael Greenberg, PhD, Director of Neuroscience at Children's Hospital Boston. "What we've found is a new mechanism for regulating brain function."
The brain's ability to form and refine synapses allows organisms to learn and respond to their environment, strengthening important synaptic connections, forming new ones, and allowing unimportant ones to weaken. Experiments in Greenberg's lab, done in rats, showed that a microRNA called miR-134 regulates the size of dendritic spines, the protrusions from a neuron's dendrites where synapses form. When neurons were exposed to miR-134, spine volume significantly decreased, weakening the synapse. When miR-134 was inhibited, spines increased in size, strengthening the synapse.
Further experiments showed that miR-134 acts by inhibiting expression of a gene called Limk1, which causes dendritic spines to grow. When neurons were exposed to a growth factor known as brain-derived neurotrophic factor (BDNF), this inhibition was overcome and Limk1 became active again, enhancing spine growth.
Greenberg believes that miR-134 - and other microRNAs his lab is studying - may play a role in fine-tuning cognitive function by selectively controlling synapse development in response to environmental stimuli. "A single neuron can form a thousand synapses," says Greenberg, also a professor of neurology and neuroscience at Harvard Medical School. "If you could selectively control what's happening at one synapse without affecting another, you greatly increase the information storage and computational capacity of the brain."
Greenberg also speculates that miR-134 may be relevant to disorders such as mental retardation and autism. He notes that loss of Limk1 due to a chromosomal deletion is associated with Williams syndrome, and that the BDNF pathway that activates Limk1 includes proteins that are disabled in tuberous sclerosis and Fragile X syndrome. All three genetic disorders can cause cognitive impairment and autistic-like behaviors.
The research was supported by grants from the National Insitute of Neurological Disorders and Stroke, the National Institute of Child Health and Human Development, the Human Frontier Science Program, and the Charles Hood Foundation.
Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 500 scientists, including eight members of the National Academy of Sciences, nine members of the Institute of Medicine and 10 members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 347-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about the hospital and its research visit: http://www.childrenshospital.org/research/.
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The NAS said people with Asperger's had a lot to offer companies
Scottish companies have been encouraged to boost their business by taking on people who have Asperger's Syndrome.
People with the condition have problems with the way they communicate with and relate to others.
The National Autistic Society (NAS) said an estimated 50,000 people in Scotland have the disorder, however most are struggling to find employment.
A conference in Edinburgh has been highlighting the business case for employing people with the condition.
Robin Walker, manager of NAS employment service Prospects Scotland, said that whereas most people would see an interview as a hurdle to getting a job, people with Asperger's see it more as a "pole vault".
It's a lifelong condition so it's always going to be there
Robin Walker
National Autistic Society
Although a person with Asperger's can be more intelligent than average, their less-developed social skills can hold them back.
In contrast to autism, the condition causes no delays in language or self-help skills, other than the limited ability to interact with others.
The NAS believes social awkwardness means people with the condition often do not get the job their intellect deserves.
"It is a communication disorder," Mr Walker said. "It's a lifelong condition so it's always going to be there.
"You have a difficulty in imagining how other people might view you."
He said people with Asperger's often interpret questions in a literal way so that someone with the disorder asked to collect all the dirty cups might assume it was all of the dirty cups in the building rather than just the office.
Life-changing
Only one in 10 people with the condition are in full-time employment.
The NAS hopes Thursday's conference will help get those with the condition back into the jobs market and highlight their skills for businesses to tap into.
Help is available for firms employing workers with Asperger's
David Fordyce, who has Asperger's, has worked at Glasgow's Museum of Transport for the past three years.
"Once I came here my life totally changed," he said. "I help people with their enquiries and the staff treat me the same as the rest of the team.
"I have thoroughly enjoyed every minute."
Alan Mitchell, of employers' organisation CBI Scotland, said taking on someone from a non-traditional background could appear daunting when firms are fighting to stay in business.
He said the government had to help out more.
'Highly motivated'
"You have to look very carefully at the support measures you can offr these companies," he said.
He said companies needed to be reassured that people with Asperger's would not hold them back and should be told about the help they can receive such as guidance and advice, support from specialist trainers and financial incentives.
He said this support would help companies make the transition which would allow the person with the condition to be as productive as possible.
The executive will put in place mechanisms to help those who face disadvantage in the labour market, such as individuals with Asperger's Syndrome and Autism
Scottish Executive spokesman
Mr Walker gave an example of a company in Denmark which checked mobile phone software and where almost all of the employees were on the Asperger spectrum.
"They are highly motivated people, very methodical," he said. "They will find the bugs."
"This company has chosen to use people with people on the Asperger spectrum as much as they can because its a positive asset for that kind of work."
A spokesman for the Scottish Executive said: "The executive are currently working on a framework aimed at all disadvantaged groups and will put in place mechanisms to help those who face disadvantage in the labour market, such as individuals with Asperger's Syndrome and Autism, to progress towards and into employment.
"There will be a focus on providing a flexible approach to the individual needs of clients and the nature of the support they require to find and sustain work."
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PITTSBURGH - A 5-year-old autistic boy died from a drug mixup, not the lead-poisoning treatment that was attempted to ease his disorder, a federal health official who reviewed the boy's autopsy results said.
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Instead of a synthetic amino acid that treats lead poisoning, Abubakar Tariq Nadama was given a medication that removes calcium, said Dr. Mary Jean Brown, chief of the Centers for Disease Control and Prevention's lead poisoning prevention branch.
"It's a case of look-alike/sound-alike medications," Brown said Tuesday. The drug "acted as a claw" that pulled too much calcium from his blood, causing an emergency event.
She said the child was given Disodium EDTA instead of Calcium Disodium EDTA. "They sound alike. They're clear and colorless and odorless. They were mixed up," Brown said.
The treatment Abubakar was receiving, called chelation therapy, is FDA-approved for lead poisoning. The therapy has not been proven to help autistic patients, though some parents and doctors advocate it because they believe autism is caused by heavy metals.
Abubakar of Monroeville died Aug. 23 in his doctor's office after his third chelation treatment, the coroner has said. Brown reviewed the autopsy report for the CDC.
Dr. Roy Eugene Kerry, who treated Abubakar, did not immediately return a message left at his office Wednesday morning by The Associated Press.
Butler County Coroner William Young has said he plans to meet soon with District Attorney Randa Clark and the state police to determine if an inquest is warranted. For now, Young is classifying the death as an accident.
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Researchers at the University of Utah have confirmed a chromosomal region that may contain a gene linked to autism by studying a Utah family with a number of autistic members.
The extended family of 31 people has seven members affected by autism, according to a press release from the University of Utah.
"This is our best, most informative family for genetics research," said Dr. Hilary Coon, a research associate professor in the psychiatry department at the University of Utah and author of the study.
The study was conducted as part of the Utah Autism Research Project. Dr. William McMahon, a medical doctor and psychiatry professor at the University of Utah, is the director of the project and has studied autism in Utah since 1981.
"The most important aspect of this finding is that it gives us a small region on chromosome 3 to begin looking at gene sequences," he said. "There are probably 40 genes that could be giving these linkage results."
So far researchers have yet to isolate the exact genes linked to autism, but having a specific region to focus is an important step.
According to a University of Utah press release, researchers used new technology to allow them to collect and survey DNA from thousands of genes on a 3-by-1 1/2- inch chip Coon said this new technology allowed the researchers to prioritize their efforts and seek out a region where autism was known to be. One gene originally believed to be linked to autism was ruled out based on the research.
Individuals with autism manifest autistic symptoms in communication, social interaction and repetitive behaviors, Coon said. The disorder manifests itself early in life, most often when the individual is approximately three years old.
There have been other theories for possible causes of autism. Coon said there are multiple and complex interacting factors that are related to autism. It is has been hypothesized that rapid brain development in the beginning years of life may contribute to autism. Coon said although there has been research done in this area, their research is concerned mainly with the genetic side of the disorder.
Coon was quick to point out that while the region being studied is thought to contain at least one gene with a link to autism, there may be many more genes in that location related to the disorder.
"The jury's still out," she said.
A previous study done in Finland linked to the same region on chromosome 3 to autism. This most recent study at the U helped to confirm the Finnish study.
"Our results were so close to their evidence, we thought it was important," Coon said in the press release.
The University of Utah is still seeking other families to participate in further autistic research. Coon said they are most interested in studying families with more than one member affected by autism, but they would not turn anyone away.</>
McMahon said they are looking for families who are from Utah or have family in Utah, because researchers have the ability to build pedigrees within the state. He said families with autistic children in which the parents would be willing to participate are ideal.
The research requires a blood sample for DNA and some psychological testing. Anyone interested in participating in the research should contact the University of Utah at (801) 585-9098.
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By Bonnie Sayers
BellaOnline's Autism Spectrum Disorders Editor
An Impression of Autism from a kid on the Autism Spectrum
As the single parent to two boys on the Autism Spectrum I started out by teaching Nicholas, the older son who happens to be higher functioning, about autism. Since Matthew is non-verbal we started with books that depict children with similar behavior and communication issues as Matthew.
The idea was to help Nicholas deal with being the sibling to someone with autism, before even tackling the issue that he too is on the Autism Spectrum. I wanted him to be able to share his frustrations about his brother and open up about what might embarrass him when on school grounds with his brother or out in public places.
There are groups for siblings, but since both boys are on the Autism Spectrum we really did not fit that profile when in actuality they are both siblings of someone with autism while being on the Autism Spectrum themselves. Here is a book entitled, Sibshops.
Ian's Walk is the best book I have found that shows what a walk around the neighborhood would be like for someone similar to Matthew. I liked that the book is from the perspective of a sibling, so Nicholas could relate to the same feelings.
Andy and his Yellow Frisbee also comes from the siblings point of view with the focus on issues taking place at school. I knew Nicholas could relate to this since Matthew attended the same school for five years.
I even chose books that were about other kids named Matthew. My Brother, Matthew. I also made a purchase of Matthew's Box, a book about a boy named Matthew with autism.
Russell is Extra Special is a book filled with black and white photographs of the family's childhood with captions. Although this book is older, it is very easy to comprehend for those that are not familiar with autism. The images still show living with autism and how siblings and a family made the most of it by capturing it in pictures.
Views from our shoes shares from many siblings on having a brother or sister who has special needs. This is very inspirational and good to look back on through the years.
My brother Sammy is also narrated by an older sibling who shows the difference between his day and the day of his "special" brother.
Autism Through A Sister's Eyes is a book I have read through, but never shared with Nicholas. I have yet to write a review on this book because of the way Asperger's Syndrome and high functioning autism are profiled. I personally felt it was not accurately described and do not want my son to be confused by the terms. I do plan on reading this again since the sister was te at the time this was written, so this might offer some insight to Nicholas who is also ten years of age.
Joey and Sam: A Heartwarming storybook about Autism touches on accepting a sibling with a disability and the steps he goes through to get there.
All these books are geared and written for children with artwork and images that are perfectly suited for the subject matter. I also purchased My Friend with Autism: A Coloring Book for Peers and Siblingsbut felt it was too childish and not really suitable for Nicholas to read. I would say this is more geared for the smaller child.
We joined a support group that focused on the parents in one room discussing issues relating to parenting a child on the Autism Spectrum with the children in another room attending to tasks with therapists in training. The concept was great but since the families were encouraged to bring siblings it was really crowded at times, and I felt my children were no longer benefiting from this group. This did give Nicholas an opportunity to be in contact with children of varying degrees on the Autism Spectrum.
The next contact with children on the Autism Spectrum was at the summer autism day camp Children with Autism Making Progress known as C.A.M.P. Here Nicholas was in a classroom with children who were also nonverbal. Over the years while at camp he has been in contact with children that are similar to his brother and also those who are higher functioning and have issues like his own.
This past summer he encountered a girl who had a behavior issue and was removed from his classroom and camp. He would tell me she was worse than Matthew. There have been times over the years where Nicholas has stated he wished his brother would talk. Having been around other children who are older, he knows that might not come to be, and I think he is getting used to that concept. He has observed other kids having screaming fits and flapping their hands like Matthew does.
With his weekly Social Skills Group he is working on goals that are specific to his needs that are part of his autism. If we had never experienced these other services Nicholas might be confused about autism when I explained to him that he also is on the Autism Spectrum. By being in the company of others within the Autism Spectrum he is now aware of the varying degrees of the Disorder and can understand that he too has autism, but it affects him differently than it does Mathew.
There are a few books on the subject that are workbooks for children on the spectrum, but they tend to overlap with Asperger's Syndrome making it not necessarily useful for Nicholas to comprehend. I have not approached the subject of Asperger's Syndrome.
I had purchased through ebay What does it mean to me?: A workbook explaining self awareness and life lessons to the child or youth with high functioning autism or Aspergers, but ended up selling since I did not feel it fit our needs. It is out of print, by Future Horizons, so the place to search for it is on eBay.
I do suggest reading Health Care Transitions for Youth with Disabilities and Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum For Young People With Autism.
A few weeks ago before school started I had to file an appeal at the Social Security Office. This had to be done within ten days so both boys had to accompany me to the local office. While I stood in line Nicholas and Matthw waited on chairs nearby. Matthew was busily eating from a bag of goldfish crackers and crinkling some papers he found. The security guard approached Matthew to tell him eating was not allowed. Nicholas informed the guard that Matthew has autism and cannot talk.
When a new security guard was on duty at the local library Nicholas was the one to tell the guard that Matthew always screams and picks many videos, as well as shakes Magazines. He told the guard he does not talk and has autism. Nicholas does not divulge to anyone that he has autism, but he understands that he has issues impacted by Autism and is getting support services as needed.
It all depends on the family makeup on when it is time to inform the child on the Autism Spectrum that they have this Disorder. I highly recommend reading some of the books I listed prior to reading through with your child. Many will produce tears as you read the similarities of those within the pages with your own child. Take the time to read through a book and ask for feedback from the child, what did they like or dislike in the book. Did they recognize anything on the pages, take note of the images and use examples from their day that are like those described in the book.
I personally do not believe in keeping the diagnosis a secret from family, school or the child. It is all about awareness and making the person with autism understand more about themselves to help them as they grow and become more independent. This all depends on the level of the child. At this point in time it would not make sense to explain to Matthew, although I have read through books with him and showed him pages trying to get a response from him.
Good luck to all those in this task of teaching the child on the Autism Spectrum about their Disorder. You might find out your child wants to write about autism as well.
http://www.bellaonline.com
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Non-coding regions of the genome - those that don't code for proteins - are now known to include important elements that regulate gene activity. Among those elements are microRNAs, tiny, recently discovered RNA molecules that suppress gene expression.
Related Biology News & Articles
How nerve cells stay in shapeWhat can change in the brain? Electrical synapses, research showsCerebral navigation: How do nerve fibers know what direction to grow in?Scientists show how thinking can harm brain cellsMicroRNAs play a big part in gene regulation - and evolution
Increasing evidence indicates a role for microRNAs in the developing nervous system, and researchers from Children's Hospital Boston now demonstrate that one microRNA affects the development of synapses - the points of communication between brain cells that underlie learning and memory. The findings appear in the January 19th issue of Nature.
"This paper provides the first evidence that microRNAs have a role at the synapse, allowing for a new level of regulation of gene expression," says senior author Michael Greenberg, PhD, Director of Neuroscience at Children's Hospital Boston. "What we've found is a new mechanism for regulating brain function."
The brain's ability to form and refine synapses allows organisms to learn and respond to their environment, strengthening important synaptic connections, forming new ones, and llowing unimportant ones to weaken. Experiments in Greenberg's lab, done in rats, showed that a microRNA called miR-134 regulates the size of dendritic spines, the protrusions from a neuron's dendrites where synapses form. When neurons were exposed to miR-134, spine volume significantly decreased, weakening the synapse. When miR-134 was inhibited, spines increased in size, strengthening the synapse.
Further experiments showed that miR-134 acts by inhibiting expression of a gene called Limk1, which causes dendritic spines to grow. When neurons were exposed to a growth factor known as brain-derived neurotrophic factor (BDNF), this inhibition was overcome and Limk1 became active again, enhancing spine growth.
Greenberg believes that miR-134 - and other microRNAs his lab is studying - may play a role in fine-tuning cognitive function by selectively controlling synapse development in response to environmental stimuli. "A single neuron can form a thousand synapses," says Greenberg, also a professor of neurology and neuroscience at Harvard Medical School. "If you could selectively control what's happening at one synapse without affecting another, you greatly increase the information storage and computational capacity of the brain."
Greenberg also speculates that miR-134 may be relevant to disorders such as mental retardation and autism. He notes that loss of Limk1 due to a chromosomal deletion is associated with Williams syndrome, and that the BDNF pathway that activates Limk1 includes proteins that are disabled in tuberous sclerosis and Fragile X syndrome. All three genetic disorders can cause cognitive impairment and autistic-like behaviors.
Source : Children's Hospital Boston
The information provided is considered general medical information for educational purposes and is not a substitute for the advice of your physician. If you think that your child needs medical attention, please go to or contact your physician or nearest health care provider.
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