AUTISM: DO WE UNDERSTAND IT?
These writings are answers to many questions raised over the last 15 years during my involvement with autism and the Society For the Autistically Handicapped. © Keith Lovett 2002
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The treatment of Autism remains controversial. Only a paper restricted to one viewpoint would try to answer the difficult question: “which treatments really work?”
This paper will not answer this, nor will it give medical advice. Instead, it will give you facts such as definition of terms, references to literature, organisations, and treatment programs, and “who is saying what about what”.
The paper avoids making judgments about treatments.
I have often been asked, by both parents and professionals, about the approaches (treatments) that have been most effective with my own son, Kie (rhymes with pie), now 17. Although it goes somewhat against the neutral stance of the paper, I have answered the question here, using Italic type (under construction). Please keep in mind that not every thing in this file has been tried with him.
Kie at 9 years.
This paper is almost certainly imperfect in both its accuracy and avoidance of opinion.
I hope that the suggestions and corrections of its readers will improve it.
The SFTAH is a non-medical advice and information center. It does not offer individual advice on health and would advise anybody seeking such advice to go to their own physician. Information given is for general use and should not be viewed as applicable to any individual situation.
Whilst every effort is made to ensure the accuracy of information we do not take responsibility for its use by individuals.
Email Keith Lovett. at : email@example.com/
- OLDER THEORIES/TREATMENTS
- CHANGES IN MEANING OF THE WORD AUTISM
- Differential diagnosis
- Current Definition of Autism– DIAGNOSTIC CRITERIAFOR AUTISM DSM-IV.
- Autistic Savant
- Characteristics of Autism
- THE MAKE-UP OF AUTISM
- SIMILAR CONDITIONS
- DIAGNOSTIC CRITERIA FOR 299.80 RETT’S DISORDER (females only)
- DIAGNOSTIC CRITERIA FOR 299.10 CHILDHOOD DISINTEGRATIVE DISORDER
- Characteristics of ASPERGER’S DISORDER
- DIAGNOSTIC CRITERIA FOR 299.80 ASPERGER’S DISORDER
- PDD or PDD-NOS “Pervasive Development Disorder/Not Otherwise Specified”
- TREATMENT & PROGRAMS (see also Treatment & Approaches in main menu.).
- EDUCATION METHODS
- STATEMENTING, UK. EDUCATION.
- Helpful draft letters for care or education
Working in the Child Psychiatry Clinic at John Hopkins Hospital, Leo Kanner, a German-born psychiatrist published his first detailed report in 1943 titled Autistic Disturbances of Affective Contact, based on similarities of case histories and behaviours of 11 children seen at the clinic since 1938.
A year later 1944 he published a brief paper identifying a childhood psychosis termed early infantile autism.
Before Kanner noticed and recorded a pattern of symptoms, such children would be classified as emotionally disturbed or mentally retarded. Kanner observed that these children often demonstrated capabilities that showed that they were not merely slow learners, yet they didn’t fit the patterns of emotionally disturbed children. Hans Asperger a German doctor essentially made the same discoveries at the same time (1944 one-year after Leo Kanner’s first paper on autism), independently of Kanner. Dr. Asperger discussed individuals who exhibited much idiosyncratic, odd-like behaviour.
Historically, it is accepted that individuals displayed autistic behaviour before Leo Kanner’s discovery.
Victor the “Wild Boy of Aveyron” who was found in the early 1800s living wild in some woods, he was mute, liked sameness, etc. (Wild Boy of Aveyron, by Harlan Lane. pb book)
1809, John Haslam gave an account of a boy, who after contracting measles his behaviour changed and became aggressive, impulsive and had repetitive speech.
Lightner Witmer, early 1900s wrote about a boy, describing his behaviour today as autism.
Most early theories of autism were psychogenic, emphasising the role of parents in causing this severe disability of behaviour and development. Psychogenic theorists argued that parents of autistic parents were intelligent, obsessive and lacking in warmth. These theorists identified the cause of autism in the family environment and described possible mechanisms; lack of maternal communication, pathological parent-child interaction, inadequate stimulation, or reactions to parental rejection. The psycholdynamic theorists, however, have never generated supporting evidence. The only empirically verified studies concerning the emotional status of parents find that the extreme stress of being a parent of an autistic child can cause emotional difficulties. These difficulties, however, are in reaction to having an autistic child and have, in no way, been shown as a cause.
Following the decline of the psychodynamic theories, several organic theories have emerged to explain dysfunctions in autism. Theorists have identified…more…
See Autism main menu.
Parents were observed to treat their autistic children without the warmth and affection, which is normally observed between parent and child.
Freudian psychology had a ready-made theory waiting for autism: that if certain basic psychological bonds between parent and child fail to form that the child will fail to progress. A Freudian theory of autism remained in vogue in the 50s and early 60s. Though the theory fit Freudian psychology hand-in-glove, there are two obvious alternative possible explanations that the Freudian theory dismisses: one is that the parents’ observed stilted interaction with the child was the result of the child’s Autistic behaviour; the other is that Autism is an extreme instance of a genetically-inherited personality trait that was present in such observed parents.
Based upon psychological theories of the basis of autism, some children were removed from their homes and put in foster care to see if they would recover. When this proved insufficient to cure them, some attempts were made to bring children through psychological states, which they missed out on by virtue of being in a dysfunctional family. Some success has been reported (as has been reported for every treatment ever promoted) but no clear-cut success that would lead to universal, long-term adoption of the methods.
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It is generally accepted that autism is not a single entity but a series of behaviours with multiple causes and neurological mechanisms. Of the known causes, one of the most important is genetic with several possible transmissions. Twin studies have shown a concordance rate for autism of greater than 50%. Other studies have demonstrated an increased risk of related language, speech and developmental problems in families with an autistic child. Autism is one of a number of possible outcomes for children with this genetic predisposition for communication, social or learning problems. Fragile x is another genetically transmitted form of autism. Although all children with this chromosomal abnormality do not have autism, 10-15% probably do, but Fragile X only accounts for 2 to 3% of cases of autism.
Other identified causes of autism are infectious diseases, metabolic disorders, and structural abnormalities. Rubella is one prenatal infection that is a proven cause of autism and others are thought to exist as well. Metabolic disorders causing autism are pku and celiacs disease and it is suspected that high uric acid levels and difficulties in metabolising purines could also be implicated. Structural abnormalities such as hydrocephalus can also cause autism; the developing technology in brain scanning equipment makes it likely that other specific structural deficits will be identified in the near future. One such deficit might relate to an under-development of the cerebellum. Though preliminary, this idea is based on the first study to suggest the specific neurological structure underlying autism. Data on the under-developed cerebellum are limited to higher functioning individuals with autism at present. New studies also suggest that vaccinations such as the MMR may be a triggering agent.
Above and beyond the distinction between the dictionary-definition of autism (see “Definition of Autism” below) and the syndrome that is the subject of this document, the syndrome has been broadened somewhat since Kanner first published his paper. Kanner reported a rate of occurrence of 1 in 10000 whereas the ASA states the rate as 15 in 10000 and SFTAH states approximately 6 out of every 10,000 (infantile autism) and 20 per 10000 (autism continuum). Kanner first identified people who were clearly not mentally retarded (since this was the unexplained group of people at the time). Since then, it has been observed that some mentally retarded people have autistic symptoms whereas others don’t; so it is thought that the conditions overlap. This explains a lot of the difference in the reported rates of occurrence.
One of the most troubling aspects of having a child with autism is the confusion among professionals concerning diagnostic issues. Diagnosing autism can be difficult because it resembles other disabilities of behaviour, communication and learning. Because autism is also a rare disorder, most professionals do not see enough cases for them to consistently identify subtle distinctions between this syndrome and related disabilities. The historical confusion between autism and emotional difficulties has further clouded the diagnostic picture. Over a period of time, autism has been misdiagnosed as many different disabilities: mental retardation, schizophrenia, development language problem, hearing impairment, or pervasive developmental disorder not otherwise specified. et. al.
Note: see Autism in main menu.
Note: an example of a dictionary-definition of autism is: “absorption in fantasy as escape from reality”. Obviously there is a big difference between the traditional definition documented by dictionaries and the syndrome this memo addresses. The difference stems from changes in word usage: in the 40s and 50s, psychologists first observed a number of children with the above symptoms and called it “early infantile autism”, borrowing the word “autism” which had already been applied by psychologists to describe people who try to escape from reality. Today, most discussion of autism center on children diagnosed as having “early infantile autism” and everyone refers to it simply as “autism”. But occasionally there is confusion when someone who means “early infantile autism” talks to someone who is thinking of the original definition. In this document, we will use the term “autism” in the sense of “early infantile autism” and refer explicitly to “early infantile autism” only when discussing both senses of the word.
The definition of the syndrome listed above is oriented to children, but note that most children do not outgrow their autism. Much of the literature on autism deals with children because educating them is such a big issue that more research, education, and writing on autism is about children than adults.
The relationship between autism and mental retardation has been a source of confusion for several decades. Many have noted the intellectual impairments in people with autism that resemble the limitations of mentally retarded people. Compared with mentally retarded people, however, individuals with autism have more intellectual strengths – which can even be above average in some areas – and a wider spread between their skills and deficits. Gross motor skills of autistic children also tend to be stronger. Mentally retarded children, on the other hand, generally have better social and communication skills in relation to their overall developmental levels. A major source of the confusion between these two disabilities has been the historical notion that autism is a relatively “pure” disability that cannot co-exist with other syndromes like mental retardation.
The relationship between autism and mental retardation has been clarified more recently with the acknowledgement that autism, as a behavioural syndrome, can and does co-exist with other disabilities. The most common of these co-occurring disabilities is mental retardation. Current estimates are that approximately 70% of individuals with autism have an additional diagnosis of mental retardation.
In identifying autism, Leo Kanner described it as the earliest form of childhood schizophrenia because of the similarities he observed between the conditions. Today, autism and schizophrenia are seen as distinct and different; autism is viewed as a developmental disorder and schizophrenia is classified as a mental illness. The other major differences are the hallucinations and delusions in schizophrenia, absent in autism, and the earlier onset of autism (almost always before age 5), the onset of schizophrenia is most frequently during adolescence.
Investigators have recently identified other important distinctions between autism and schizophrenia. The family histories of children in these diagnostic groups are generally different; children with autism have stronger family histories of developmental disabilities and families of schizophrenics have stronger histories of personality, affective, and other emotional disorders. Autistic children are physically healthier and have better motor skills on the average. While autistic children never form appropriate interpersonal relationships, schizophrenia is viewed as a withdrawal from presumably unsatisfactory relationships, often because of a particular traumatic event. Finally, schizophrenics generally have higher IQs than children with autism and they also have periods of remissions when their behaviour returns to near normal.
Language and hearing impairments can also be confused with autism. Language impairments in children with autism include delayed development of vocal expression and language comprehension, echolalia, pronoun reversals and problems with sequencing. These communication difficulties can occur and sometimes limit the social relationships of children with language impairments, though not nearly as much as in children with autism. Compared with autistic children, those with communication handicaps use alternative forms of communication more effectively (e.g. Gestures), have higher IQs, engage in more imaginative play and have a better prognosis.
Non-responsive and indifferent to others, children with autism can also be misdiagnosed as hearing impaired. Recent advances in testing have reduced the frequency of this problem; audiologists have now better ways of testing non-verbal children. There is also a growing awareness that non-responsiveness does not mean that a child cannot hear. Other differences between hearing impaired and autistic children include higher IQs, better relationships, better non-verbal communication, and a better prognosis for children with hearing impairments.
A recent source of diagnostic confusion has been the introduction of pervasive developmental disorder, not otherwise specified (pddnos) into the current diagnostic system, dsm-111-r. Within this scheme, autism is classified as a pervasive developmental disorder (pdd); pddnos is the only other sub-classification under pdd. According to dsm-111-r, pddnos is designed to classify those children with characteristics of autism but not the full syndrome. Unfortunately, a lack of precision has made it unclear exactly what these pddnos children should look like. Designed to clarify the boundaries of autism, pddnos has added more confusion than illumination.
The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV): A new “multiaxial” evaluation system in the DSM 1V uses a “biopsychosocial” approach to psychiatric diagnosis- taking into account all relevant biologic, psychological, and social factors. One axis includes personality and developmental disorders that are characterised by onset in childhood or adolescence and fairly stable persistence into adult life. Children with an autistic disorder, have what DSM 1V terms qualitative impairments in several areas – namely, reciprocal social interactions, verbal and non-verbal communication including imaginative activity. They also have markedly restricted repertoires of activities and interests.
DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER
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 impairments in the use of multiple non-verbal behaviours such as eye-to-eye gaze, facial expression, body posture, 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, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
d) lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or “mechanical” aids)
(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 through alternative 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) stereotyped and repetitive use of language or idiosyncratic language
d) 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 two 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, non-functional routines or rituals
c) stereotyped and repetitive motor mannerisms (e.g. 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. Rett’s Disorder or Childhood Disintegrative Disorder does not better account for the disturbance
The following definition is from the Society for the Autistically Handicapped (SFTAH)
AUTISM is the severest of the developmental disabilities that typically appears during the first three years of life. It occurs in approximately 6 out of every 10,000 (infantile autism) and 20 per 10000 (autism continuum) births and is four times more common in boys than girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism.
3 features existing in a child’s behaviour define autism:
1 A strong tendency to avoid social contact, especially to avoid reciprocal interactions, such that the child is said to be, aloof, withdrawn and, living in a world of his/her own.
2 A strong tendency to be rigid and stereotyped in behaviour and be upset by changes in routine.
3 Delay in or failure in acquiring a useful language, together with characteristic features in language.
1 A strong tendency to avoid social contact, especially to avoid reciprocal interactions, such that the child is said to be aloof, withdrawn and living in a world of his/her own. When an infant or toddler has a strong tendency to avoid social contact, especially to avoid reciprocal interactions, (a persistent failure to develop two-way social relationships in any situation) such as s/he does not cuddle, make eye contact or respond to affection and touching, that the child is said to be aloof, withdrawn, and living in a world of his/her own, parents are seriously concerned. Many autistic children fail to show a preference for parents over other adults and do not develop friendships with other children.
2 Delay in or failure in acquiring a useful language, together with characteristic features in language. There may be a delay in, or failure in acquiring useful language skills, together with characteristic features in language, i.e.. (Facial expressions and gestures) are not used in a communicative manner.
3 A strong tendency to be rigid and stereotyped in behaviour and be upset by changes in routine. The child’s relationship to objects may not normal, have strong tendency to be rigid and stereotyped in behaviour, and be upset by changes in routine i.e. (changing route to shops or moving or changing furniture, putting a vase in another place etc.). The child may show unusual, extreme responses to objects–either avoidance or preoccupation. Rigid and stereotyped behaviour can also be a tendency toward repetitive activities of a restrictive range. Spinning and rhythmic body movements such as arm flapping, hopping on the spot, tapping objects, playing with string, paper etc. may occur. High functioning autistic children may repeat television commercials or indulge in complex bedtime rituals. When a child shows these symptoms, “autism” is one of the diagnoses that the child and adolescent psychologist will consider. Parents who suspect autism in their child should ask their family doctor or paediatrician to refer them to a child and adolescent psychologist, who can accurately diagnose the autism and the degree of severity, and determine the appropriate educational measures. With appropriate treatment and training, many autistic children can develop certain aspects of independence in their lives. Autism occurs by itself or in association with other disorders such as viral infections, metabolic disturbances, and epilepsy. It is important to distinguish autism from retardation or mental disorders since diagnostic confusion may result in referral to inappropriate and ineffective treatment techniques. The severe form of the syndrome may include extreme self-injurious, repetitive, highly unusual and aggressive behaviour. Special highly structured educational programs have proven to be most helpful.
A small percentage of children/adults while profoundly autistic have islets of high functioning to genus abilities. SEE Autistic Savant
A small percentage of children/adults while profoundly autistic have islets of high functioning to genus abilities. The autistic savant is one of the most fascinating cognitive phenomena in psychology.
“Autistic savant” refers to individuals with autism who have extraordinary skills not exhibited by most persons. Historically, individuals with these exceptional skills were called ‘idiot savants,’ a French term meaning unlearned (idiot) skill (savant). In a 1978 article in Psychology Today, Dr. Bernard Rimland introduced a more appropriate term ‘autistic savant,’ which is the current label.
The estimated prevalence of savant abilities in autism is 10%, whereas the prevalence in the non-autistic population, including those with mental retardation, is less than 1%.
There are many forms of savant abilities. The most common forms involve mathematical calculations, memory feats, artistic abilities, and musical abilities. A mathematical ability which many autistic individuals display is calendar memory.
They could be asked a question like’ what day of the week was May 22, 1972? and they can determine the answer within seconds–Monday. Others can multiply and divide large numbers in their head and can also calculate square roots and prime numbers without much hesitation.
Examples of some memory feats include: remembering everything about presidents (birth/death, term in office, names and birth dates of family members, cabinet members, etc.), memorising the UK motorway system, and remembering everyone’s birth date, even after meeting the person once and not seeing him/her for 20 years.
Some autistic individuals with savant abilities are incredible artists. Dr. Rimland’s son, Mark, is quickly establishing himself as an excellent watercolour artist. A child named Nadia drew beautiful pictures of horses, and her drawings have been compared to those of Rembrandt. Interestingly, she lost her drawing abilities when she started to learn to speak. Another artist with autism, Richard Wawro, who was described in an issue of Reader’s Digest, is legally blind and draws in crayons. His works sell for up to $10,000, even the Pope owns one of his paintings.
Music is another common savant ability. Many performers with autism have perfect pitch and also have a great memory for music. In some cases, a person can hear a classical piece once and play it back in its entirety. Tim Baley, who also has Fragile X, is a concert pianist and the piano player for Hi Hopes, a musical group of singers and performers with autism and/or mental retardation. Hi Hopes played at the Los Angeles autism conference a few years ago and have even played at the White House. (Tim’s mother wrote a book about his life. If you would like to obtain a copy of her book or learn more about Tim, you can write to: Mrs. Baley, Box 8207, Anaheim, CA 92812). The movie Rain Man exposed millions of people to autism as well as the autistic savant phenomenon. (Unfortunately, some people now have the impression that all autistic individuals have these abilities.) In the movie, Raymond displayed a great memory for ball player statistics, memorised parts of the telephone book, and counted cards in Las Vegas.
The reason why some autistic individuals have savant abilities is not known. There are many theories, but there is no evidence to support any of them. For example, Dr. Rimland speculates that these individuals have incredible concentration abilities and can focus their complete attention to a specific area of interest. Admittedly, researchers in psychology feel that we will never truly understand memory and cognition until we understand the autistic savant.
Autistic children display unusual behaviour. A typical autistic child’s behaviour is likely to include some of the following:
* lack of fantasy play
* no speech
* non-speech vocalisations
* delayed development of speech
* echolalia: speech consisting of literally repeating something heard
* delayed echolalia: repeating something heard at an earlier time
* confusion between the pronouns “I” and “You”
* lack of interaction with other children
* lack of eye contact
* lack of response to people
* treating other people as if they were inanimate objects
* when picked up, offering no “help” (“feels like lifting a sack of potatoes”)
* preoccupation with hands
* flapping hands
* balancing, e.g. standing on a fence
* walking on tiptoes
* extreme dislike of certain sounds
* extreme dislike of touching certain textures
* dislike of being touched
* either extremely passive behaviour or extremely nervous, active behaviour * extreme dislike of certain foods
* behaviour that is aggressive to others
* lack of interest in toys
* desire to follow set patterns of behaviour/interaction
* desire to keep objects in a certain physical pattern
* repetitive behaviour
* self-injurious behaviour
* “islets of competence”, areas where the child has normal or even advanced competence. Typical examples:
+ drawing skill
+ musical skill
+ calendar arithmetic
+ memory skills
+ perfect pitch
There are other conditions which sometimes coincide with autism:
* synesthesia (an unexpected sensation arises when a particular sense modality is stimulated)
* Cerebella abnormalities revealed by MRI scans
* raised levels of serotonin in the brain
See Main index “Autism” .
It is generally accepted that autism is not a single entity but a series of behaviours with multiple causes and neurological mechanisms. Of the known causes, one of the most important is genetic with several possible transmissions. Twin studies have shown a concordance rate for autism of greater than 50%. Other studies have demonstrated an increased risk of related language, speech and developmental problems in families with an autistic child. Autism is one of a number of possible outcomes for children with this genetic predisposition for communication or learning problems. Fragile x is another genetically transmitted form of autism. Although all children with this chromosomal abnormality do not have autism, 10-15% probably does.
Other identified causes of autism are infectious diseases, metabolic disorders, and structural abnormalities. Rubella is one prenatal infection that is a proven cause of autism and others are thought to exist as well. Metabolic disorders causing autism are pku and celiacs disease and it is suspected that high uric acid levels and difficulties in metabolising purines could also be implicated. Structural abnormalities such as hydrocephalus can also cause autism; the developing technology in brain scanning equipment makes it likely that other specific structural deficits will be identified in the near future. One such deficit might relate to an under-development of the cerebellum. Though preliminary, this idea is based on the first study to suggest the specific neurological structure underlying autism. Data on the under-developed cerebellum are limited to higher functioning individuals with autism at present.
Finally, autism is often found in association with several nervous system difficulties; retrolental fibroplasia, tuberous sclerosis, congenital syphilis, phenylketonuria and neurolipidosis. The incidence of autism is much higher in children with these neurological conditions than in the normal population.
There are a number of conditions, which cause children to display some of the symptoms of autism. Also, on occasion, brain injury has caused people to display some of the symptoms of autism.
Some children who exhibit symptoms similar to autism have been discovered to be deaf. A child should always have his hearing checked before being identified as Autistic.
Inborn error in carbohydrate metabolism. [Inability to metabolise galactose?
Normal development to age 3 or 4, then abrupt onset of fretfulness, negativism and anxiety. Regression of mental development and gradual loss of speech.
LKS “Landau-Kleffner Syndrome”
familyvillage There are usually associated behavioural abnormalities which range from mild to, severe. They include aggressiveness, hyperactivity, attention disorder, depression and rarely psychosis.
The aphasia (loss of speech) first manifests itself as a word deafness with the child’s parent experiencing an increasing difficulty in having their child respond to them, even when they raise their voice. This progresses until there is a complete inability of the child to understand the speech of others. The child’s speech then can deteriorate with speech becoming telegraphic. There is a decrease in vocabulary and an increasing use of jargon unrecognisable by others. These difficulties can fluctuate in severity and the severity will vary from child to child. Over time, speech improves to a varying degree. While this is the classically described course of language involvement, more recent papers have expanded the picture to include children who experience onset of the syndrome at a younger age and, hence, have poorly developed speech. Others have described children with this syndrome whose language skills do not improve but rather undergo progressive deterioration.
A genetic disorder of the metabolism which will result in brain damage during the first years of life unless special dietary measures are taken. Inadequate production of the enzyme which converts the amino acid phenylalanine into another amino acid, tyrosine. The extra phenylalanine accumulates in body fluids and converts to several chemicals that damage the brain. Symptoms include mental retardation as well as some of the symptoms of autism. PKU has been eliminated by screening all children immediately after birth so proper dietary measures can be taken.
A neurological disorder that occurs only in girls. Unlike autism, girls initially show normal development, then regress. The initial symptoms include some that are associated with autism. From DSM IV:
A. All of the following:
(1) Apparently normal prenatal and postnatal development (2) apparently normal psychomotor develop (3) normal head circumference at birth B. Onset of all of the following after a period of normal development:
(1) Deceleration of head growth between ages 5 and 48 months (2) loss of previously acquired purposeful hand skills between ages 5 and 30 months with subsequent development of stereotyped hand movements (e.g. hand wringing or hand washing) (3) loss of social engagement early in the course (although social interaction often develops later) (4) appearance of poorly co-ordinated gait or trunk movements (5) severely impaired expressive and receptive language development with severe psychomotor retardation.
Much rarer than autism. THE MERCK MANUAL
A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age appropriate verbal and non-verbal communication, social relationships, play and adaptive behaviour.
B. Clinically significant loss of previously acquired skills (before age 10 years in at least two of the following areas:
(1) Expressive or receptive language (2) social skills or adaptive behaviour (3) bowel or bladder control (4) play (5) motor skills
C. Abnormalities of functioning in at least two of the following areas:
(1) Qualitative impairment in social interaction (e.g., impairment in non-verbal behaviours, failure to develop peer relationships, lack of social or emotional reciprocity)
2) Qualitative impairments in communication (e.g., delay or lack of the development of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of verbal make-believe play)
(3) Restricted repetitive & stereotyped patterns of behaviour, interests and activities, including motor stereotypes and mannerisms.
D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia.
A condition thought to be genetic that causes uncontrollable motor and/or vocal tics. David Cummings, who published a book on the genetic links between various neurological disorders, is conducting a major long-term study.
Obsessions are thoughts or images that are involuntary, intrusive, and anxiety provoking. Compulsions are impulses to perform a variety of stereotyped behaviours or rituals. OCD is a neurological disorder, cause uncertain. However, it is often confused with obsessions and compulsions caused by mental illness or simple neurosis, in much the way that the term “Autism” has been used to refer to any person who is severely withdrawn. For a clearer picture of OCD, read *The Boy Who Wouldn’t Stop Washing * (I * think * the author is J. Rappaport). Clinical OCD has easily categorised symptomology that tend to occur at certain stages of life; counting and sorting and “evening out” usually start during childhood, “grooming” compulsions usually start at puberty, and “ruminating” (obsessions) usually begin during adulthood.
Cocktail party speech syndrome
A syndrome comprising the following characteristics: (1) A perseveration of response, either echoing the examiner or repetition of an earlier statement made by the child. (2) An excessive use of social phrases in conversation. (3) An over-familiarity in manner, unusual for one’s age. (4) A habit of introducing personal experience into the conversation in irrelevant and inappropriate contexts. (5) Fluent and normally well articulated speech.
A typical Asperger disorder child’s behaviour is likely to include some of the following:
*lucid speech before the age of 4 years, vocabulary and grammar are usually fairly good.
*Communication is sometimes repetitive.
*Voice tends to be flat, emotionless.
*Conversations revolve around self, br* Can be obsessed with complex topics, IE. Patterns, weather, music, history, numbers etc.
*Often thought to be eccentric.
*IQ’s. many are in the above normal range in verbal ability and below average in the performance range.
*Many have dyslexia, writing problems, and difficulty with mathematics.
*Lack common sense.
*Tend to have concrete thinking v Abstract.
*Movements tend to be clumsy/awkward.
*Odd forms of self-stimulatory behaviour. *Sensory problems appear not to be as dramatic as other forms of autism. *Socially aware but displays inappropriate reciprocal interactions.
Researchers feel that Asperger’s syndrome is probably hereditary in nature because many families report having an “odd” relative or two. In addition, depression and bipolar disorder are often reported in those with Asperger’s syndrome as well as in family members.
At this time, there is no prescribed treatment regimen for individuals with Asperger’s syndrome. In adulthood, many lead productive lives, living independently, working effectively at a job (many are college professors, computer programmers, dentists), and raising a Family.
Sometimes people assume everyone who has autism and is high functioning has Asperger’s syndrome.
However, it appears that there are several forms of high-functioning autism, and Asperger’s syndrome maybe one form, it is not conclusive that Asperger’s syndrome is a separate condition from the autistic continuum.
Similar to Autism except that language development is normal. In some people’s minds, the same thing as high-functioning See: Autism. From DSM IV (p): A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) Marked impairments in the use of multiple non-verbal behaviour such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) Failure to develop peer relationships appropriate to developmental level
(3) 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 to other people)
(4) Lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behaviour, interests, and activities, as manifested by at least one of the following:
(1) Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) Apparently inflexible adherence to specific, non-functional routines or rituals
(3) Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) Persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairments in or other important areas of functioning
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than social interaction), and curiosity about the environment in childhood
F. Criteria are not met for another specific Pervasive Developmental Disorder of Schizophrenia
Non-verbal learning disabilities
Semantic-pragmatic speech disorder
Autism, Asperger’s syndrome and semantic-pragmatic disorder: Where are the boundaries? http://www.jaymuggs.demon.co.uk/bishop.htm
Semantic Pragmatic Disorder http://www.hyperlexia.org/gordysp1.html
A mental illness which can result in behaviour similar to autism. Unlike autism, schizophrenia usually starts in adolescence or early adulthood, and involves delusions or hallucinations. Note that “Childhood Schizophrenia” used to refer to what we now label “Autism” and that the former term is still used in some circles.
PDD therefore becomes a term for individuals who do not fully meet the medical criteria for autism, but it is a very loose term. From DSM IV: 299.80 PERVASIVE DEVELOPMENTAL DISORDER NOT OTHER SPECIFIED (including Atypical Autism) This category should be used when there is a severe and pervasive impairment the development of reciprocal social interaction, verbal and non-verbal communication skills, or when the stereotyped behaviour, interest and activities are present, but the criteria are not met by a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder or Avoidance 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 sub-threshold symptomology (note; fewer than 6 items), or all three.
Mucopolysaccharoidoises (Type I) Has coincided with autism. Adenylosuccinate lyase deficiency a disorder of nucleic acid metabolism. Has coincided with autism.
Aphasia is an acquired disorder caused by brain damage which affects a person’s ability to communicate. The primary symptom of aphasia is impairment in the ability to express oneself when speaking. The understanding of speech, reading, and writing are also often impaired.
Aphasia, is sometimes confused with dysarthria, a difficulty in speaking caused by weakness, incoordination, or other disability which affects the mechanical aspects of producing speech. The term aphasia refers to a disorder in the use of language (i.e., the way we represent our ideas in words).
Receptive Developmental Dysphasia
Bear in mind the types of dysphasia:
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Receptive (Wernicke’s dysphasia):
Cannot understand spoken or written word
Speech fluent BUT disorganised
Expressive (Broca’s dysphasia)
Cannot answer appropriately
All other aspects of speech normal
EXCEPT the inability to name objects, e.g. show the patient a pen, ask him what it is he is unable to say it, but suggest it “is this a pen” & he will agree with much relief.
Patient may demonstrate circumlocution (using long sentences to try & overcome inability to name objects)
Can follow commands
But repeat words poorly
Name objects poorly
The diseases clearly associated with Cereal grains or “Gluten intolerance” are the bowel disorders bearing the names,”celiac Disease”, “Non-Tropical- Sprue”, or “Gluten-enteropathy”, and the skin disorder, Dermatitis Herpetiformis. See:Celiac support page.
See:GLUTEN INTOLERANCE / GLUTEN-FREE DIET.
Also see Celiac’s.
The most common cause of inherited mental retardation, with an incidence of about 1/1500 in males and 1/2500 in females. The inheritance pattern of the disease is unlike other X-linked disorders, because it shows significant numbers of apparently unaffected male carriers and some clinically affected females. The disease derives its name from the presence of a fragile site on the X chromosome of affected individuals.
ADD “Attention Deficit Disorder”
A disorder consisting of having a short attention span. Dr. C. Gillberg from Sweden has proposed (in addition to others) that there may be a continuum from ADD to autism. He proposes that some kids be in the middle of the continuum, with a combination of ADD and autistic features. These kids often have “soft” neuralgic signs (incl. fine and/or gross motor co-ordination problems) in addition to their ADD, and are socially awkward.
ADHD “Attention Deficit Hyperactivity Disorder”
Another term for ADD when the person is also hyperactive. Thought to be caused by a chemical imbalance in the brain, which results in a biological deficiency in a child’s ability to concentrate. Diagnosis of ADHD is a grey area: there are 18 criteria involved in identifying ADHD including such traits as inability to concentrate and aggressiveness. The question of how many criteria a child must have before pharmaceutical treatment is however still debated. A daily dose of a controversial prescription drug called RITALIN, has been reported to cause marked improvement in many children’s behaviour.
A disorder consisting of precocious reading development, disordered language acquisition and social and behavioural deficits. It is a matter of discussion whether to consider it a type of autism or asperger’s syndrome.
Autistic Children who have no apparent neurological basis for their disorders may actually be suffering from an inherited, early-onset form of manic-depression, according to results of two studies conducted at Duke University Medical Centre, Durham, NC. The findings were reported in the May and August 1994 issues of “Developmental Medicine and Child Neurology.”
Resembles autism only superficially as Angelman kids are profoundly retarded. It is caused by a particular defect in chromosome 15 and can now be diagnosed accurately by chromosome testing. The other name for it is the Happy Puppet because the children’s limbs are usually held out from the body stiffly and the children always have a smiling countenance. Another syndrome caused by a defect in chromosome 15 is Prader-Willi.
Having an XXY chromosome. It is easily testable through genetic testing and occurs in about 1 in 1000 births. Often includes developmental and language impairment, and has been correlated with some kinds of withdrawn behaviour.
DAS “Developmental Apraxia of Speech”
Also known as “Developmental Verbal Dyspraxia”. A neurologically based speech disorder observed in children learning to speak. It affects the rate of speech development, the number of sounds in a child’s repertoire, and the child’s ability to combine sounds during the production of words.
tendency to accumulate of lacitic acid in the blood. Its connection with autism is that it has been found to coincide with autism more than chance would dictate.
The inability to recognise faces, also known as face blindness.
Irlen Syndrome/Scotopic Sensitivity Syndrome (SSS)
Visual perceptual problem identified by Helen Irlen which causes (among other things) black-on-white print to be difficult to read, and which can be alleviated by filtering out portions of the light spectrum with coloured glasses. See Irlen Lenses under treatment.
Others that have been mentioned: Congenital Rubella Syndrome, Hypomelanosis of Ito, mucopolysacchrides, fetal alcohol effect, cocaine use during pregnancy, Anxiety disorders, Mucopolysaccharidoses (MPS), Lesch-Nyhan Syndrome, Intermittent Explosive Disorder, static encephalopathy, sleep disorder, abnormal fear structure, Cornelia de Lange Syndrome, Wilsons Disease, Schizoid Personality Disorder, Porphyria (?), Bi-Polar Affective Disorder, Defiant Disorder, Spacial Planning Disorder, Neurofibromatosis, Candida Albicans.
There have been 3 major approaches to treatment for children with autism over the years: psychodynamic, medical and behavioural. Psychodynamically oriented therapies dominated the early work when autism was viewed as an emotional disorder and some of these interventions are used today. Biological interventions have included drug and vitamin therapies. Behavioural approaches have followed the principles of learning to teach appropriate behaviours and eliminate inappropriate ones in people with autism. Behavioural approaches have also emphasised special education, focusing on the development of academic and school related skills.
Every treatment for autism has its detractors and none has proven to benefit every case. Thus, the task of judging the effectiveness of potential treatments will ultimately fall on you–to a larger extent than you will feel qualified to make. If the professional to whom you take your child strongly recommends some program or treatment, know that there are others who will recommend some other just as strongly.
Note that many programs are made up from parts of several methods.*
There is no standard, universally accepted treatment of autism; in fact, every single method has its detractors. General approaches may be summarised as follows:
* Biochemical (food allergies, medication, food and vitamin supplements)
* Neurosensory (sensorial integration, over stimulation and patterning, auditory training, facilitated communication, daily life therapy)
* Psycho-dynamic (holding therapy, psychotherapy and psychoanalysis, option institute (which also falls in behavioural))
* Behavioural (Discrete trials (Lovaas and others), behaviour modification with and without aversives, TEACCH)
Note: Many of the programs mentioned above also use other approaches to some degree and an attempt was made to place them in the most appropriate category.
The literature seems to show that food allergies and the possibility of candida should be checked as a very low percentage of children may be autistic because of these problems which can be controlled through drugs or diet. As far as other kinds of drug therapy are concerned, there is no drug that is universally successful in treating autistic symptoms and that in some cases usually useful drugs may produce negative results and vice-versa. Vitamin B6 with magnesium and some other vitamins and DMG produce positive results in many cases.
Any educational program (SI,AIT, psychotherapy, behavioural, etc.), if done intensively, produces some positive results. There are rare cases of recovery claimed by most educational methods. In addition, parents as producing negative results have reported some methods.
Behavioural approaches are backed by scientific studies as well as anecdotal evidence. The best known, because of the amount of related scientific literature, are Lovaas’ version of discrete trial and the North Carolina TEACCH programs. Both are very structured programs with a lot of positive reinforcement, two factors, which seem to be important.
Clearly, it is important to have centers of expertise for PDD, autism, and related disorders in order to help families and school boards in experimenting and choosing the right therapy for each child.
Note: this list is far from complete at this time and misses some treatments.
The story of Secretin appears to be gathering pace as more parents respond to the said success of Billy Tommey and other children treated with the injection of the pancreatic derivative. However, the practical difficulties in both obtaining Secretin and having the injection administered are proving the largest barrier to most parents.
Secretin is a polypeptide hormone involved in the regulation of gastric function. It is prepared from the duodenal mucosa of pigs. Following administration by intravenous injection, it causes an increase in the secretion of the pancreas of water and bicarbonate into the duodenum. It is used alone or in conjunction with pancreozymin or cholecystokinetic agents as a test for exocrine pancreatic function, and in the diagnosis of biliary-tract disorders.
Secretin has been known for at least 20 years and it has a variety of functions but not much in the way of medical uses. One thing it has been used for is to test pancreatic function in other words to see if the pancreas is functioning correctly. A small amount is injected and the amount of “bicarbonate” which appears in the bloodstream is measured a short time afterwards. The bicarbonate secretion is required in order to neutralise the acid from the stomach and allow the enzymes in the duodenum to function.
As well as secreting bicarbonate, the pancreas secretes many other enzymes including lipases and especially peptidases. These peptidases will break down the peptides which, according to proponents of the opioid excess theories of autism, may be responsible for the problems. One way to diminish the problems caused by these potentially harmful peptides is the removal of them from the diet. That is why people experiment with gluten and casein free diets.
Since secretin will stimulate the pancreas to produce these enzymes it could ameliorate the symptoms by this mechanism. It could, also or alternatively, be acting in the brain itself or in the intestinal wall (if it acts at all).
There are numerous anecdotal reports (a hundred or so) of the benefits of this form of therapy from parents.
There are some trials taking place to prove or dis-prove the efficacy although there has been a brief report published by Karoly Horvath.
The drug is not licenced for this purpose, some physicians will prescribe and infuse this medication in the UK for clients with Autism.
A drug without side effects does not exist. Secretin has not been used over periods of time, so we don’t know what will happen when it is. With products as complex as this we should expect them to occur. The benefits/advantages ratio will have to be taken into account.
There would seem to be a small percentege of clients with autism that Secretin may have helped to varying degrees.
To date a controlled clinical trial of SYNTHETIC HUMAN secretin in children with autism or PDD reports that secretin has no more effect than a placebo.
One suggestion has been put forward that may provide an answer to the current situation. That is to administer a homoeopathic preparation of Secretin. Ainsworths of London have prepared this and it is now available for those who wish to try it. We would however make the following comments about this approach.
Firstly that there is no guarantee that the remedy will work on every child and Secretin certainly seems to favour the children with so called leaky-gut symptoms.
We would stress that this has not been tested clinically for use in Autism. This is no different to the conventional Secretin injection. Homoeopathic remedies are by nature less harmful than conventional drugs and side effects are less of an issue compared to the problem of generating any effect in this case.
Secondly the effect may build up slowly rather than very suddenly (with the injection) since the dose is smaller. This would require the daily dosage of pills that are dissolved in the mouth or drops for at least two weeks at a time.
Some have attributed some success in reducing the characteristic symptoms of autism through the ingestion of large amounts of Vitamin B6. Bernard Rimland pursued this line of investigation. Magnesium is given with it. I think the reason is that high vitamin B6 tends to deplete the body’s magnesium. Suggestions have been that it reduces hyperactivity and obsessive/compulsive behaviours.
Bernard Rimland pursued this line of investigation. Suggestions are that it sometimes helps people with autism with speech & with their attention span. DMG does not require a prescription in the US; being considered a food supplement (once called vitamin B-16, but it was ruled not a vitamin because no specific medical problem is associated with a deficiency of it.) The health food store people say that it is supposed to increase “oxygen uptake” by the blood stream and athletes sometimes take it for that reason.
Eliminating dietary gluten/casein.
For some children, the effects of this intervention are obvious to their parents within hours or days. Children who seem to respond most dramatically to the removal of dairy have a history of ear infections, inconsolable crying, poor sleeping patterns, and excessive craving of milk and dairy foods. Loose stools and/or a craving for bread and pasta generally indicate gluten intolerance. This is a relatively harmless intervention and should be attempted as soon as possible, to see if a child does respond. If so, further exploration into biochemical treatment is recommended.
A drug that decreases blood serotonin concentrations. Some autistics have abnormally high blood serotonin concentrations so experiments were carried out to see if this drug affected the behaviour of such autistics (or other autistics). Some success was reported. Dr. Edward R. Ritvo pursued this line of research. Recently some physicians have expressed concern about this treatment because of strong negative side effects.
Periactin (AKA cyproheptadine)
Another drug that decreases serotonin concentrations. This drug is normally used as an antihistamine but because of its additional affect on serotonin, has been tried on autistics.
Has shown promise in helping autistic children become more talkative, sociable, less aggressive and have an increased attention span. Available without prescription.
Auditory Integration Training (AIT)
A method of changing a person’s sensitivity to sound at different frequencies. It was originally developed to combat the onset of some kinds of deafness, but was tried on an autistic child and cured her. Since then it has not produced any cures, but has been credited with success in reducing some of the symptoms of some children. In particular, some autistic children show a strong aversion to some sounds, and with Auditory Integration Training have lost their aversion and exhibited other reductions in the symptoms of autism. There are two methods of AIT, the Tomatis and the Berrard. They are different enough that they should perhaps be considered different therapies.
A kind of AIT developed by Alfred Tomatis. Over several weeks, the person listens to classical music with the low frequencies filtered out. Over time, voices (also filtered) are introduced, then the missing frequencies. Treatment requires weeks, typically 2 hours of listening a day.
Sensory Integration Therapy
A method of helping people who are her oversensitive to the 5 senses by overwhelming them with sensory experiences, e.g. swing them, roll them, get them jumping and spinning. Usually provided by occupational therapists that have learned the method.
Martha Welch is the primary proponent who argues that autism results from a failure to bond with the child. The mother forcibly holds the child. Both Temple Grandin and Bernard Rimland have argued that it provides sensory stimulation and the psychogenic basis is erroneous. Temple Grandin has stated that forced holding is not necessary. under such a theory, Holding Therapy can be classified as a kind of sensory stimulation.
(also “Lovaas Method”, “Behavioural Intervention”, “Applied Behavioural Analysis” (ABA), “Discrete Trial Training” (DTT)) Use of behaviour modification (a.k.a. operant conditioning) which was originally developed by B.F. Skinner (a prime developer of Behavioural Psychology) outside the purvue of autism. Lovaas and other psychologists adapted it as a therapy/educational method for autistic children, and it is his adaptation, which is known as The Lovaas Method or DTT. Catherine Maurice’s book *Let Me Hear Your Voice* is an account of two children recovering from Autism through use of this method, and Lovaas’s *The Me Book* is a widely used handbook for this type of method. Behavioural Therapy now has a lot of adherents who are vociferous in their claims that it is the only method with a study (complete with control group) documenting its success rate. The study is documented in Lovaas’s paper “Behavioural Treatment of Normal Educational and Intellectual Functioning in Young Autistic Children”. Detractors of the method claim that participants of the study were not truly autistic, that the children are turned into robots, and that the method is dehumanising and severe. The method also arouses controversy through its sometime association with the use of punishment & aversives to decrease self-destructive behaviours. (See more complete citations to the above-mentioned books and paper in the section below: “Bibliography”).
TEACCH programme: In 1972 the North Carolina General Assembly passed legislation mandating creation of the Division for the Treatment and Education of Autistic and Related Communication Handicapped Children. Located in the Department of Psychiatry, School of Medicine at the University of North Carolina at Chapel Hill, the programme was named Division TEACCH. It was the first statewide, comprehensive community-based programme dedicated to improving the understanding and services for autistic and communication handicapped children and their families. The TEACCH programme has received National and International recognition and is widely regarded as an outstanding model of service, training, and research. In 1972, the Programme was given the Gold Achievement Award by the American Psychiatric Association “for the establishment of productive research on developmental disorders of children and the implementation of an effective clinical application.” A National Institute of Mental Health Publication, Families Today, prepared for the 1980 White House Conference on the Family, described TEACCH as the most effective state-wide programme available to autistic children in the country. The American Psychological Association’s Division of Clinical Child Psychology recognised TEACCH as a model national programme for service delivery to children and their families. Numerous individual awards have also been given to the Founder and current Directors for their roles in implementing this exemplary model. Division TEACCH makes important contributions to service, training, and research.
TRAINING: Division TEACCH is an international Centre for interdisciplinary training in autism. Professionals from over 45 states and 20 foreign countries have participated in TEACCH training activities during the last few years. Countries involved in TEACCH training efforts include the United States, England, (see courses work- shops. main menu) Denmark, Sweden, France, Belgium, Iceland, Brazil, Venezuela, Argentina, Taiwan, Hong Kong, Singapore, Israel, Saudi Arabia, Kuwait, Russia, Serbia and Poland among others. TEACCH training programmes are offered on several topics: diagnosis, assessment, structured teaching, educational services, residential and vocational programmes and parent training.
RESEARCH: The TEACCH programme has maintained a rigorous empirical research orientation since its beginning as the Child Research Project in 1964. At the clinical and educational level, this means a diagnostic understanding of autism based on direct evidence rather than mere speculation. At the research level it means studies related to needs of clients and their families. Integration of intervention and research is a strength and important priority of the TEACCH programme. Division TEACCH has maintained a steady production of research and publications over the years. The Programme has published over 50 books, chapters and articles. TEACCH has been involved with research and development of diagnostic and assessment instruments, treatment approaches, social skills training programmes, medication, teacher training curriculum’s, and the nature of adolescents and adults with autism among others. Family studies have also played a central role in the TEACCH research efforts. The development of service, training, and research programmes and the ability to integrate them in one agency have been the hallmark of the TEACCH programme and important reasons for its enormous impact on services and understanding of autism throughout the world.
RESEARCH STUDIES: established the foundation for Structured Teaching by demonstrating that visual information is more easily processed by people with autism than verbal information (1966). Following this study and related observations of children with autism in the 1960’s, Structured Teaching was developed as a programme for working with them. According to Division TEACCH, Structured Teaching helps people with autism by organising their environments providing clear, concrete, and meaningful visual information. An early study by Schopler, Brehm, Kinsbourne and Reichler (1971) demonstrated the effectiveness of Structured Teaching by altering the degree of structure in a teaching programme for students with autism. The investigators found improved attending, relatedness, affect, and general behaviour in the structured learning situation. Other investigators have reported similar success with Structured Teaching approaches showed that parents could be trained to use Structured Teaching principles with their children. Using pre- and post-test videotaped observations of parent-child interactions to assess the impact of six to eight hours of parent training, they demonstrated improved effectiveness in the parents’ use of Structured Teaching techniques following a carefully designed training programme. Following this programme, parent- child interactions were assessed as more positive and enjoyable and there was an increase in child co-operation as well. Short (1984) examined the effects of the TEACCH Structured teaching application by comparing child behaviours in the time interval between referral and actual diagnostic evaluation with behaviours during a similar time interval after Structured Teaching parent training had commenced. Compared with their behaviour during the waiting period, children whose parents received intensive TEACCH Structured teaching training showed a significant increase in appropriate behaviours. This improvement generalised to settings outside of the Clinics where the training had occurred as well.
OUTCOME DATA: Several outcome studies have examined parent reports of the effectiveness of Structured Teaching and the TEACCH intervention programmes. Schopler, Mesibov, DeVellis, and Short (1981) received completed questionnaires from 348 families who had participated in the TEACCH programme. Parents consistently and with overwhelming enthusiasm, reported that their relationships with Division TEACCH were positive, productive, and enriching. Most impressive were the parents’ reports of the high percentage of their adolescent and adult children with autism who were still functioning in community-based programmes. Of the families with older children among the respondents, 96% reported that their children were still living in their local communities. This response compared favourably with concurrent follow-up studies showing that between 39% and 74% of autistic adolescents and adults were generally in large residential programmes outside of their local communities (De Myer, Pontius, Norton, Barton, Allen, & Steele 1972; Rutter et al., 1967)
CONCLUSION: From its start as a research project in the mid-1960’s, Division TEACCH has developed, delivered and continues to provide, exemplary services to people with autism and their families in North Carolina while revolutionising concepts and approaches throughout the world. The programme’s strong collaborations between parents and professionals, as well as between the University and the state delivery system, have been potent forces in providing comprehensive services for North Carolina’s citizens with autism and relate disorders. Traditionally competitive and often adversarial, parents, the University, and North Carolina’s state agencies have been able to co-ordinate their respective interests to develop a programme that is an international model of excellence in service, training and research. The empirical research orientation that generated the Structured Teaching approach has been critical to the programme’s evolution. Grounded in a strong scientific tradition, Structured Teaching has evolved and expanded through the day-to-day clinical activities of the programme. Division TEACCH is a vibrant example of how science can contribute to society and society can inspire the evolution of science when the two co-operate with shared goals. When co-operative efforts such as TEACCH occur, the benefits to society, and especially to people with autism and their families, are immeasurable.
Term for employment of punishment. One class of aversive would be physical pain though the term is not specific to that. Use of aversives in the treatment of Autistic or any children is a very controversial topic (see “Controversies”). Many condemn all use (or probably more specifically, all use of pain as an aversive) and some say there are alternatives that are always equally or more effective. Proponents say selected employment has produced immediate positive results that has saved the lives of autistic children inclined to continuous self-injurious behaviour who have resisted all the non-aversive alternatives. They also say experience has shown that the degree of pain required is often so little as to defy logic: a very slight pain or something not painful can often stop a child from engaging in very painful self-injury.
Natural Language Paradigm (NLP)
A behaviour intervention, thus could be classed with the Lovaas method, though there are differences. A source of information on it is Koegel & Koegel’s book. A newer name for this is “Pivotal Response Training”.
Pivotal Response Training (PRT)
Newer name for “Natural Language Paradigm”.
Developed to treat dyslexia and other learning disabilities, the use of coloured lenses to treat the visual processing difficulties of people with autism is relatively new (1994). It has been popularised by Donna Williams (author of *Nobody Nowhere* and *Somebody Somewhere*).
Lenses in glasses that are prisms: thicker at one edge than the opposite edge.
Social skills training and social stories
Teaching verbal individuals (including those called “high functioning” and Asperger’s”) many of the unwritten social rules and body language signals that people use in social interaction and conversation. Carol Gray uses a technique called “social stories” to help illustrate these social rules in a variety of situations and appropriate responses. Social stories and “scripting” are also used with non-verbal individuals to teach appropriate responses and prepare the individual for transitions. In very young child, they may be in the form of photographs or pictures.
A tricyclic antidepressant which may relieve some symptoms of autism.
A tricyclic antidepressant.
Second-generation antidepressant (SSRI, or selective serotonin reuptake inhibitor). Studies on SSRIs reveal significant improvement in perseverative behaviours and some other autistic spectrum symptoms (social withdrawal, behavioural rigidity, etc.).
One of a group of stimulants which include amphetamine, amantidine and fenfluramine. It can sometimes be very effective for certain hyperactive children (so much so that it gets overused for others). See also “Dexedrine”.
Used to treat ADD and ADHD in the same way as Ritalin. Likely used less than Ritalin because its name is associated with drug abuse. One develops a tolerance for both drugs so that increases in dosage over time are often necessary to maintain their effect.
A lot of treatments on this list come under the general heading of psychology (in its most general sense, perhaps all do). There are parents of autistic children for whom “psychology” is a dirty word because they associate it with theories and treatments of autism which hypothesise bad parenting, e.g. lack of bonding between mother and child (see “History” section below). Treatments associated with such theories include Psychotherapy and Holding Therapy. Other therapies in this list (such as Behavioural Therapy) clearly fall under the heading of Psychology, yet are certainly not predicated on any “bad parenting” theory.
See “Psychology” above, and “History” section below.
** Psycho-dynamic Therapy/Psycho-dynamic Therapy I’m not certain whether this term is used for a specific therapy, but I’ve seen it used for what might be termed Psychotherapy and related kinds of therapy. (See “Psychology” above and “History” section below).
**SRRI “Selective Serotonin Reuptake Inhibitor”
A class of psychoactive drugs that includes Prozac, Zoloft, Luvox, and Paxil (paroxetine), part of a larger class of such drugs that also includes non-selective serotonin reuptake inhibitors. Serotonin is a brain chemical released by neurones and “reuptaken” by neurones.
Also an SRRI (see Zoloft). Studies have been done.
From *American Health* October, 1993: Washington: Psychiatrists at the National Institute of Mental Health have found that clomipramine, an antidepressant, also relieves many of the symptoms of autism, a severe developmental disorder. Patients’ ability to interact with others is much improved.
Normally used to regulate blood pressure and perhaps other purposes. It is used for ADD children at suppertime or bedtime to help them attend to evening activities and to settle down sufficiently to get enough sleep.
An anti-convulsant used for seizures when others do not work. It is usually avoided in children due to possible serious side effects during development.
A salt used primarily to treat bipolar disorder, also used in other, possibly related conditions including autism.
(oral version of naloxone) a narcotic antagonist reported by Lensing & Panksepp to have a dramatic and global effect on autism. Hypothesis: In the late 70’s and early 80’s several of scientists suggested that the behaviour of some autistic individuals sometimes resembles the behaviour of people stoned on hard drugs (heroin, morphine, etc): little sociability, fixes on strange objects, little or no pain sensation, no interest in life, states of euphoria, etc. It was suggested that perhaps these autistic individuals have, for whatever reason, an excess of pleasure, painkilling hormones in the brain such as endorphins to which they are addicted (like joggers to joggers’ high which is produced by endorphins). As a result they may require/desire a minimum dose every day and that the self-stim and/or auto-aggression may be ways to produce these hormones and satisfy the craving. Naltrexone’s effect: Naltrexone blocks the effects of drugs such as heroin and morphine on the brain and has been used since the early 70’s for drug addicts. Therefore, naltrexone should also block the effects of the natural hormones such as endorphins. (Morphine apparently is very close in structure to and simulates the endorphins.). A number of very well controlled studies on the effect of Naltrexone on autistic traits and deficiencies have been published. Nearly all indicate some positive results for many of the test subjects: less auto-aggression, less hyperactivity, more sociability, more communication, etc. Not all the studies report all of these effects but most report some positives.
Roughly consists of therapist playing with child while talking to the child and trying to induce the child to talk. The goal is to help the child acquire language and the working knowledge of every day life we all require. The method is to use play, Which is a component of a typical child’s language acquisition, in conjunction with constant interaction with a therapist. Play therapy has been used for autistic children and children with emotional disturbances.
A hormone that has a role in the immune system and in controlling ones sleep-cycle. It is sometimes given to children who have trouble sleeping at night. For that reason and others, it has been tried on Autistic children. Lately a lot of claims have been made about the benefits of melatonin for a variety of things.
A neuroleptic which is used to abate symptoms of psychosis.
the trade name for Naltrexone.
**Vision Integration Therapy ?
Just as language and motor skills are achieved through a sequence of developmental stages, vision must also follow a progression of development. An infant is not born with the visual abilities that he will need in order to function successfully in his world. These abilities must develop through a variety of experiences across a period of time. At any point during this process, the visual development may be hindered, altered or completely stopped, sometimes by injury, illness, emotional trauma, lack of appropriate stimulation, or other unidentified causes. When language and/or motor skill development is interrupted, parents and teachers seek to identify the problem and intervene with therapy or training activities designed to assist the child in overcoming the delay. A similar approach is available to parents of children (or to adults) who have inadequately developed visual abilities.
Distorted Input. When we speak of vision, we are referring to the ability of the brain to organise and interpret the information seen so it becomes understandable or meaningful. Even individuals with good eyesight (20/20 acuity) can have undiagnosed vision problems that make it difficult to correctly comprehend the visual message. If sensory input, whether it is visual, tactile, auditory, etc., is received in a distorted or faulty manner, the behaviours that are based on that input are likely to be distorted. Many of the behaviours characteristic of autism, and many behaviour problems associated with learning disabilities, may include attempts to manage in spite of a visual system, and other systems that fail to provide understandable, reliable information.
Vision Therapy. Since vision development follows predictable stages, it is a process that can respond to training if disruptions occur. Vision training is available through Behavioural (developmental or functional) Optometrists who have received postdoctoral training in this specific field. Unlike the correction of refractive problems (near and farsightedness, and focusing problems), which may only require the use of a specific prescriptive lens, vision therapy is a process of retraining the visual perceptual system so it functions with optimal efficiency. The process follows a sequence of steps aimed at improving the visual system. Therefore, it is a procedure with therapy activities prescribed by the vision therapist, which are carried out in the office, and frequently reinforced with home activities.
Identifying the Problem. Vision dysfunction’s often go unrecognised or misdiagnosed because people do not understand how vision relates to behaviour and can affect the overall performance of the individual. In addition, many people develop ways to compensate for their visual difficulties, which masks the fundamental cause of the problem. So how does a parent know if their child has a problem with visual development? Since dysfunction’s in the visual system can lead to a variety of behaviour, learning, social, work and health problems, the parent and/or teacher should consider this as a possibility for any individual with developmental disabilities. There are also many observable clues that can indicate visual difficulties, including:
•Eyes that cross or turn, even a little bit.
•Tilting, turning the head, covering or closing an eye in order to use only one eye.
•Looking at things out of the corner or side of the eyes.
•Blinking, grimacing, squinting and other compensating behaviours.
•Visual stimulation behaviours: finger flicking; obsession with spinning, patterns, or other visual effects; sighting along linear objects (counter edges, telephone wires).
•Short attention span, avoidance of close work and activities.
•Low frustration level, irritability, emotional immaturity.
•Headaches, dizziness, nausea, car sickness and light sensitivity.
Obtaining an Evaluation. Parents interested in a functional or developmental visual evaluation for their child should locate UK the health dept. USA a Behavioural Optometrist through the College of Optometrists for Vision Development, (619) 425-6191, or the Optometric Extension Program, (714) 250-8070. In the evaluation, the doctor should be interested in the child’s symptoms, general physical health, developmental history and specific visual demands. In addition, the doctor should examine not only the clarity of eyesight and health of the eyes, but eye movements, skills, focusing ability, depth perception and binocularity (eyes working together as a team).
What to Expect. The optometrist should discuss the results of the evaluation and recommend treatment in the form of lens, prisms or visual therapy. Therapy sessions are usually between 30 – 60 minutes, depending on the person’s attention span. A closely monitored program is essential in order to evaluate progress and make adjustments as changes occur.
Vision evaluations and therapy provided by Behavioural Optometrists should, at some point, include the use of developmental lenses. This may include prisms to help achieve better visual alignment and processing, and/or red/green filters (anaglyphs) and Polaroid filters during the individual sessions. As parents interview the provider of their choice, questions should be asked and answered regarding this type of lens. When this type of lens is used, parents should be aware that it is a lens to help direct more efficient visual processing and this lens must be monitored by the optometrist every three to four weeks. If the optometrist is not seeing the child regularly, this is a red flag for parent concern. Lenses are the tool used by Behavioural Optometry to produce postural and processing changes. If lenses are not used in vision therapy, parents should ask questions about the procedure.
How Will My Child Respond? Frequently, parents express concern that their child will not accept wearing glasses, particularly if the child is tactile defensive or very resistant to change. Some individuals with visual problems generally adjust quickly to wearing glasses once they see the difference and how the glasses help them. A behavioural plan following learning principles such as desensitisation, positive reinforcement, shaping, etc. can be implemented for those who have difficulty accepting new glasses. Many parents report that their child shows interest in glasses, frequently taking glasses off other people to try on themselves. This may be an indication that the child is seeking to find a solution to his vision problem!
Vision therapy may correct or improve visual functioning conditions, which will otherwise continue to interfere with appropriate development and learning. Sometimes the changes occur quickly and dramatically; more often, the individual will make gradual progress, with spurts of more rapid growth mixed with short periods of regression, typical of normal developmental progression. Great many parents have reported positive results with vision therapy.
**Craniel Sacral Therapy
A form of myofacial release performed by physical therapists and osteopaths.
Antidepressant which is being used for obsessive compulsive disorder and in some cases autism.
A steroid. It and other steroids are used when Landau Kleffner Syndrome is suspected, but there have been reports of children responding to steroids even though they don’t have the classic EEG findings of LKS and their language disability was always present.
**EPD (Enzyme Potentiated Desensitisation) shots
Sort of homeopathic brew of stuff that you’re allergic /sensitive to and it is given in shot form once every 6-8 weeks. It is being used for people with multiple chemical/environmental sensitivities/ADD/ADHD/Autism.
Brain stimulation activities for brain-injured children developed by Glenn Doman and Carl Delacatto. It involves cross-patterning, patterning and sensory exercises developed to enhance memory and processing.
Neurological Organization is the physiologically optimum condition which exists uniquely and most completely in man and is the result of a total and uninterrupted ontogenetic neural development. This development recapitulates the phylogenetic neural development of man and begins during the first trimester of gestation and ends at about six and one – half years of age in normal humans.
This orderly development in humans progresses vertically through the spinal cord and all other areas of the central nervous system up to the level of the cortex, as it does with all other mammals. Man’s final and unique developmental progression takes place at the level of the cortex and it is lateral (from left to right or from right to left).
This progression is an interdependent continuum, hence… if a lower level is incomplete all succeeding higher levels are affected. The final lateral progression must become dominant and must supersede all others.
Pre-requisite, however to such dominance is the adequate development of all lower levels. In totally developed man the left or the right cortical hemisphere must become dominant, with lower prerequisite requirements met if his organization is to be complete. UNITED STATES
Delacato International Consultants in Learning 306 Williams Road Fort Washington, PA 19034
USA PHONE: 001-215-540-9252 FAX: 001-215-540-9253 E-mail: firstname.lastname@example.org ENGLAND / UK Delacato Centre, UK C/O Robin & Julia Burn 26,Gwscwm Park Burry Port CARMARTHENSHIRE SA16 0DX
Wales Phone & Fax: 44-(0)1-554-834 951 E-mail: email@example.com
**Dolphin Therapy (or Dolphin-Assisted Therapy)
For more than 20 years, intensive research directed towards dolphins and healing has been conducted. Dr. Betsy Smith, an educational anthropologist at Florida International University, probably formally launched the studies in 1971, although Dr. John Lilly has been doing the work since the 1950’s. Today, there are more than 150 dolphin assisted therapy researchers worldwide.
Scientific research now shows that interacting with dolphins can:
reduce stress and increase relaxation;
•help people with disabilities such as Down’s syndrome, autism, ADD, muscular dystrophy and spinal cord injuries;
•boost the production of infection fighting T-cells;<br>•stimulate the production of endorphins, and hormones; and
•help people with cancer and AIDS.
The results are shown through monitoring brain wave patterns, psychological testing, and studying the blood chemistry for release of endorphins. It is shown that being in the presence of the dolphins induces an alpha brain state. Profound physiological effects are shown in the health of the immune system, the state of the brain, and in the make-up of cells.
There are many theories about the healing effects being reported: They range from the effects of increased relaxation, the stimulation of the immune system, the emotional release often experienced by being in the presence of the dolphins, changes in body tissue from the dolphin sonar, bioentrainment, to the healing powers of joy and the unconditional love expressed by the dolphins.
Bioentrainment shows that the energy field of the body can be affected by sympathetic resonance with another energy field. For those of you familiar with the practice of toning in a group, you see the same principle at work: everyone starts with their own tone, and eventually the tones become the same sound. Dolphins have a joyful, peaceful and compassionate nature, and their energy vibrations have powerful effects on people. It may be for this reason, people living with depression can be particularly responsive to the subtle energies of the dolphins.
Another theory is that the sounds the dolphins emit through their whistles and clicks effect the body in much the same way that sound and music therapy does. A person in the water with the dolphins can actually feel themselves being scanned with the echolocation being directed at them. It resonates in your bones and you can feel it pass through you and travel up your body, producing a tingling sensation.
anti-dopanine agent which also works against serotonin.
**Epsom Salt Baths
see Phenolsulphertransferase (PST) deficiency
**Dimethyl Amino Ethanol (DMAE)
A food substance (abundant in fish) said to effect mood, memory, and learning. Sold as a nutritional supplement by some health-food outfits.
**Ginko Bilboa supplements?
Drug sometimes used to help reduce stress (if this is suspected as possible cause of seizures) relaxant.
Involves unlocking certain areas in the body that are blocked in order for the cerebral spinal fluid to flow correctly. Among the practitioners are some chiropractors.
Drug used to prevent seizures, also sometimes used for autistic symptoms.
Anitfungal medication used in the treatment of candida and other yeast infections.
Anitfungal medication used in the treatment of candida and other yeast infections.
**Eliminating dietary yeast
Music Therapy. It is said it can help…•Facilitates creative expression in people who either are non-verbal or have deficits in communication skills •Provides the opportunity for experiences that open the way for and motivate learning in all domains of functioning •Creates the opportunity for positive, successful and pleasurable social experiences not otherwise available to them. •Develops awareness of self, others and the environment that improves functioning on all levels enhances well being and fosters independent living.
One Definition of Music Therapy: Music Therapy is the use of music, as a therapeutic tool for the restoration, maintenance and improvement of psychological, mental and physiological health. It is used for the habilitation, rehabilitation and maintenance of behavioural, developmental, physical and social skills-all within the context of a client-therapist relationship.
The Overall Aim of Music Therapy: The overall aim of Music Therapy is to actively engage individuals in their own growth, development and behavioural change and for them to transfer musical and non-musical skills to other aspects of their life, bringing them from isolation into active participation in the world.
Long Term Goals of M.T.
* To improve self-image and body awareness
* To increase communication skills
* To increase the ability to use energy purposefully
* To reduce maladaptive (stereotypic, compulsive, self-abusive, assaultive, disruptive, perseverative, impulsive) behaviours
* To increase interaction with peers and others
* To increase independence and self-direction
* To stimulate creativity and imagination
* To enhance emotional expression and adjustment
* To increase attending behaviour
* To improve fine and gross motor skills
* To improve auditory perception
**Intravenous Immunoglobulin (IGIV, IgIV, or IVIG)
Intravenous Gamma Globulin (IVIgG)
A treatment for autism based upon the theory that autism can be caused by an autoimmune condition in the brain. The treatment is generally confined to patients who show a positive response to Myelin Basic Protein, a protein component of brain myelin.
Imipramine (Tofranil) is an antidepressant that is also used to treat a number of disorders including bedwetting and autism (quite a combination!) It is in the Desipramine family.
Drug used to treat hyperactivity.
See also the comments below under “Controversies”.
There are a number of methods & techniques used in the education of autistic children. Many teachers use a variety of combinations of methods. Some teachers attempt to identify an individual student’s learning style and modify curriculum and materials to suit the student’s learning style. For example, many children with autism are visual learners. Teachers will use pictures, charts and visual representations when teaching. Materials developed for children with learning disabilities who are visual learners are often helpful. Teachers also use concrete materials (i.e. Montessori materials) for students who learn well through their tactile senses. A general comment: autistic people don’t generalise very well, and one technique used to accommodate this is to give them the opportunities to practice skills in real situations, not mock-ups. Use real money to teach about money, use real foods to teach about food, cooking, and nutrition, use real public places (stores, libraries, etc) to teach about public behaviours. Note: my division between “treatment” and “educational methods” and placement of various activities among the two is far from a perfect system, e.g. where does FC go? Is it an educational method? So far, I’m just living with the imperfect system rather than trying to invent the logical categories allows perfect classification of each approach/activity/treatment/educational method/etc.
**Teacch PROGRAMME: See under treatments, as it is education and a treatment.
** Whole Language Therapy
Whole language therapy is the term referring to a method of instruction in which speech is combined with sign language, pictures, and physical stimuli in order to bombard the child with the material that needs to be learned.
** Occupational Therapy?
**Motor Planning Therapy?
** Teacher Modelling?
** Peer Modelling?
** Mainstreaming (also called Inclusion or Integration)
Mainstreaming refers to teaching children with special needs in regular classes with other children. Inclusion is a term coined to describe the philosophical argument that children with mental, physical, or emotional handicaps are entitled to an education within the mainstream of public education. Although there are different degrees of inclusion, for the most part, inclusion advocates support the argument that the segregation of children by diagnosis or handicap is not in the best interest of the child. Advocates of “full inclusion” argue that children should be integrated into regular education classrooms at all times.
Teaching autistic children without the benefit of a specially-trained teacher and classroom tailored for such teaching was first attempted as a matter of necessity in small school systems with too few autistic children to make it practical to set up specialised facilities. It was soon observed that autistic children in such situations in general did better than children in tailored classrooms, and the policy of “mainstreaming” was born. Theory has it that separating autistic children from a normal environment just exacerbates their problem. Children with special needs must be educated with as little restriction as necessary and some school systems have responded by placing autistic children (and other children with special needs) in normal classrooms. Arguments for mainstreaming include better role models for autistic children, and increased opportunities for social interaction, and higher expectations by teachers. Arguments against include more opportunity for intense social skills training, more control over structure and routine, crucial factors in the education, training, and everyday lives of many autistic children. In actual practice, few autistic children ever have the opportunity to be educated in classrooms tailored to there needs–the choice is often whether the child is mainstreamed, or in a “general-purpose special-education” classroom, known in the business as a “self-contained classroom”.
The philosophical position of inclusion is based primarily on two arguments:
I) segregating, children in special classes or programs denies these children access to normal classes or denies these children to access to normal experiences, and
2) segregated services have not resulted in adequate education for handicapped students. While the r inclusion sound similar to another movement, mainstreaming, there are important differences. Mainstreaming handicapped children has typically involved integrating children when the child was able to demonstrate that he/she could successfully participate in the regular planned activities within the regular education class. Inclusion advocates typically argue that mainstreaming efforts have forced the handicapped child to “earn” time in the integrated settings. Inclusion advocates typically support the notion that each child has a right to be included, and that necessary support services and accommodations to the child’s handicap must be made within the regular education classrooms.
While strongly urging and promoting “normalising” experiences for autistic students, one must also adhere to other important principles. These include individualisation, reliance on empirically based approaches rather than ideologically based philosophies, and treatment and education that begins with and emphasises an understanding of the problems of autism. The elaboration and operationalising of these principles has led to a network of educational programs in some areas in some countries. Among the options developed, one can find highly structured; intensive specialised classrooms for autistic students, cross-categorical classrooms that serve one or more students with autism, and regular education classrooms that serve one or more children with autism. Often, placement for children with autism involves a combination of educational settings. Individualisation, when properly carried out, leads to optimal, unique solutions for each student, based on his/her needs rather than ideology. The heterogeneity one sees in autism requires many options and possibilities, not one solution for all.
1) Recognising the important value of preparing all persons with autism for successful functioning within society. Each person with autism should be taught with the goal of successful functioning with as few restrictions as is possible.
2) Decisions about including children with autism into fully integrated settings must be made consistent with the principal of the “least restrictive environment” as a guiding principal. No person with autism should be unnecessarily or inappropriately denied access to meaningful educational activities. However, it should be noted that the concept of least restrictive environment requires that appropriate learning take place. Placement decisions also require that students be capable of meaningful learning and functioning within the setting selected.
3) Activities, which are inclusive for children with autism, should be offered based on an individual assessment of the child’s skills and abilities to function and participate in the setting. Inclusion activities are appropriate only when preceded by adequate assessment and pre-placement preparations including appropriate training. Inclusion activities typically need to be supported by professionals trained in autism who can provide assistance and objective evaluation of the appropriateness of the activity.
4) Inclusion should never replace a full continuum of service delivery, with different students with autism falling across the full spectrum. Full inclusion should be offered to all persons with autism who are capable of success in fully integrated settings. Partial inclusion is expected to be appropriate for other clients with autism. And special classes and schools should be retained as an option for those students with autism for whom these settings are the most meaningful and appropriate.
Some schools teach autistic children sign language if they are not developing speech. There is evidence that sign is easier than speech: children of deaf parents who learn sign through normal interaction usually start using it a bit earlier than other children start using speech. Also, some autistic children seem to pay attention to hands more than they do other people’s faces.
**Facilitated Communication (FC or F/C)
(a closely related term is: “Facilitated Communication Training”, FCT) Another person (the “facilitator”) holds the autistic’s hand, allowing the autistic to decide which key on a keyboard to press or which letter or sign to touch. While computers are used for FC, often a letterboard or a “Canon Communicator” (a device portable device manufactured by Canon which is something like a “Brother labelmaker”; they were originally designed for people who could not talk but were known to be able to type, but they fit well with FC). The facilitator typically provides resistance to the arm and finger, leaving it to the autistic to push their hand and finger towards the right key. The technique was developed for people with severe physical handicaps, but was discovered to work with autistics and is now part of the education of many autistic children. It has met with a lot of success under the caveat that when you watch someone communicating this way, it is impossible to tell if it is the child who is communicating or if it is the facilitator. Critics suggest either that facilitators are faking it (but there are far too many otherwise credible educators who are successful facilitators to give this much credit) or that somehow the autistic person picks up the facilitators unconscious desires from minute hand movements. Tests have sometimes proved that facilitation resulted in real communication and sometimes that it did not. One result of the use of Facilitated Communication is the use of it to elicit accusations of abuse. In cases where the only evidence of abuse is Facilitated Communication, the law and the courts have been forced to evaluate its effectiveness in individual cases. This has encouraged, even forced practitioners to start doing more rigorous testing of individuals to assure that they actually are saying what they appear to be saying. The American Psychological Association adopted a resolution on Facilitated Communication that ended thustly: THEREFORE, BE IT RESOLVED that APA adopts the position that facilitated communication is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy.
Dignity through Education and Language Centre (DEAL). 538 Dundenong Road. Caulfield, 3162. Australia. Language Centre (DEAL).
Facilitated Communication Institute, Syracuse University, 364 Huntington Hall, Syracuse NY 13244-2340. Syracuse University
**Daily Life Therapy
A method developed in Japan and imported into the USA. It includes elements normally found in the education of autistic children, but places unusual attention to physical exercise. It has been said to have achieved “unprecedented results”. The first school (Higashi School) to use this method was opened in Tokyo in 1964, and a school following the same principles was opened in Boston in 1987 (USA Higashi).
“Daily Life Therapy,” pioneered by Dr Kiyo Kitahara at the Higashi School in Japan, provides an education based on integration with non-handicapped children and emphasises rigorous physical education and the arts.
Population’s Served Autistic, Autistic-like, Pervasive Developmental Disorder.
Populations Not Served Multi-Handicapped (physically disabled), Severe/Profound Mental Retardation, Emotionally Disturbed, Character Disorder, Uncontrolled Seizure Disorder.
Enrolment: M/F, Age Range Served: 3 – 22, Age at Admission: 3 – 12 (up to 16 considered), Program: Day/Res., Staff/Pupil Ratio: 1:6 Day 5:16 Res., # of Months Open: 12, # of Days Open: 217 Day 304 Res., Current Enrolment: 120
The Boston Higashi School admits students throughout the year; however, candidates are encouraged to apply prior to the beginning of each semester (Sept/Jan). The Day/Residential Program is open to students 3-22. Primary age of admission is 3-12 with students up to 16 considered. Primary reason for referral is autism. SEAs, LEAs, intermediate school districts; parents or other agencies may refer candidates.
MA DOE and MA OFC approve the Boston Higashi School as a Day and Residential Program. MA DSS and MA DMR provide funding for placements. States and countries represented from placements include: AL, CA, CT, FL, IL, IN, MA, MD, MI, NH, NJ, NY, OH, PA, RI, VA, WI, Australia, Colombia, Guam, Ireland, Japan, Liberia, Norway, Pakistan, Philippines, Puerto Rico, Taiwan, United Kingdom, Ukraine, Venezuela, and Yugoslavia.
ASA, CEC, COSAC, GBAAPS, Natick Rotary Club, Japan Society of Boston, Japanese Association of Greater Boston, Lesley College, MAAPS, MAPSE, Musashino Higashi Gakuen School, Tokyo, Japan, NAPSEC, and South Shore Chamber of Commerce.
*Current Research Projects:
(1) Massachusetts General Hospital and Dartmouth-Hitchcock Medical Centre,
“Effects of Perinatal Stressors on Developmental Disabilities”
(2) New England Medical Centre, “Collaborative Linkage Study of Autism”
(3) Tufts New England Medical Centre, “Genetics, Neurobiology and Neuropsychology of Autism: Toward a Clearer Definition of the Autism Phenotype”.
Daily Life Therapy is an educational methodology based upon a development model of group dynamics, physical education, art, music, academics and vocational training. Whole language and a social-communicative approach is utilised for language acquisition and the development of communication skills. The computer centre with state-of-the-art software enhances learning, language, and literacy. Academics designed for individual capabilities are emphasised. Physical education and vigorous exercise are used to reduce anxiety, gain stamina and establish rhythm and routines. Exercises are founded upon principles of sensory integration and vestibular stimulation that lead to the development of co-ordination and co-operative group interaction.
Academics including language arts, math, social studies, and science are compatible with typical school curricula to prepare each student for inclusion opportunities. Art and music provide opportunities to gain mastery and appreciation for aesthetics.
The vocational curriculum is designed to ensure that employment opportunities naturally unfold to include a rich diversity of work experiences. Upon entering high school, all students participate in community work and ultimately employment. Areas of employment opportunities may include clerical, custodial, stocking, food service and landscaping. All vocational students are paid employees.
The residential program is a related educational service designed to teach daily living and social skills and to support the Day Program in order for students to maintain and derive educational progress. The residential program is an educational component to optimise life-long inclusion in the community and not a place to provide long-term living arrangements. Family support services offer parent training and involvement through regularly scheduled Parent Study Meetings, One-Day Sessions (during winter and spring vacations) and respite assistance. Clinical assessment and therapeutic services are also provided.
Location and Facilities
Our day program is located in Randolph, MA. From Route 128 South to Route 93 North, Exit 5A (Route 28 South). Our residential program, situated on 43 acres of beautifully wooded land, is located in South Natick, MA at 109 Woodland Road, just off Union Street.
History and Philosophy
Boston Higashi School, Inc. is an international program serving individuals, ages 3-22, with autism. Our philosophy is based upon the acclaimed tenets of Daily Life Therapy developed by the late Dr. Kiyo Kitahara of Tokyo, Japan. Our holistic approach captures the essence of humanity and reflects sensibilities and sensitivities, the intellect and the esthetics of humankind, attaining harmony in all aspects of life. Dr. Kiyo Kitahara’s method provides children with systematic education through group dynamics, modelling, and physical activity. The goal of this educational approach is for the children to develop physically, emotionally, intellectually and to achieve social independence and dignity.
Higashi School Japan.
Higashi School, Boston.
Roland, C.C., G.G. McGee, T.R. Risley, and B. Rimland. “Description of the Tokyo Higashi Program for autistic children.” Autism Research Institute 4182 Adams Avenue, San Diego, CA 92116 +(619) 281-7165 Publication #77, 1987.
l Social Stories Unlimited TM:
Teaching Social Skills with Social Stories and Comic Strip Conversations
Jenison Public Schools Jenison, Michigan 49428 © Carol Gray, 1995. All rights reserved. Social Stories UnLimited? is a registered trademark
Social Stories Unlimited? Is an approach to teaching social skills through improved social understanding and the extensive use of visual materials. This approach is designed to help parents and professionals understand the perspective of the student, while at the same time providing the student with information regarding what is occurring in a given situation, and why. An increasing variety of social interventions comprise the Social Stories UnLimited? approach. Two of these interventions, social stories (Gray and Garand, 1993, 1993; Gray & Jonker, 1994) and Comic Strip Conversations (Gray, 1994) are briefly described in this paper.
Social stories and Comic Strip Conversations have been found to be an effective tool for teaching social and communication skills to a wide variety of students, in a wide variety of situations. Originally developed for students with autism, these techniques are also applicable to other students with special needs, including students with learning, emotional, cognitive and communicative impairments. Interestingly, there are a few reports of social stories resulting in significant decreases in stuttering in young children. In addition, social stories are rapidly becoming part of many pre-school programs and Comic Strip Conversations have been found useful in teaching reading comprehension to elementary students. Compatible with a wide variety of social skills programs, curriculums and instructional techniques, social stories and Comic Strip Conversations have been found to be versatile and easily tailored to meet a wide variety of needs.
A social story is a short story that describes a situation in terms of relevant social cues and common responses, providing a student with accurate and specific information regarding what occurs in a situation and why. Each story is carefully developed according to guidelines based on the learning characteristics of students with autism. Research has provided support for the use of social stories with children with autism (Swaggart, B.L. et al, 1995). Informal case reports and experience with social stores indicate that they are individuals from pre-school through adult, especially those who are interested in letters or numbers, and/or who are able to comprehend written material (though modifications may be made for not-yet readers).
Considering most social stories are written for a specific student and situation, the format, style and reading level of each story varies considerably. For example, a social story for a pre-schooler may involve a simple story with a few words, large print and simple illustrations. In contrast, a social story for a high school student with Asperger’s syndrome may include complex descriptions of a social situation, including information about what other people are thinking, and why.
Social stories are written in response to individual student needs identified as the result of:
1) Observations of situations which are difficult for the students;
2) The student’s responses to questions about social situations which indicate the student is “misreading” a given situation; or
3) Social skills assessments and curriculum’s, or
4) A Comic Strip Conversation.
Based on identified needs, a social story may:
1) Personalise or emphasise social skills covered in any social skills training program;
2) Translate a goal (possibly written by a student) into understandable steps;
3) Explain the “fictional” qualities of a story, video, movie or television show, identifying realistically appropriate from inappropriate interactions or
4) Teach a routine, as well as helping a student accommodate to changes in routine or “? forgetting”,
5) Address a wide variety of behaviours, including but not limited to aggression, fear, and obsessions and compulsions.
A social story is written according to specific guidelines. These guidelines assist a parent or professional in gathering needed information and developing and effective social story. Each social story starts with extensive and detailed information. This information includes where a situation occurs, who is involved, how long it lasts, how it begins and ends, what occurs, and why. This information is gathered through interviews with those involved with the student or situation, and through careful observation of the target situation.
Observation of the student and the situation yield important information. Observers look for those events they can actually see, as well as noting possible variations in the routine. For example, a gym class is usually scheduled for Tuesdays at 10:30. Sometimes, though, gym may be cancelled or rescheduled to allow for a special activity. By recognising factors which may alter a situation, and writing these variations into a social story, each story prepares a student for the possibility of unexpected changes. Therefore, the sentence, “Gym is usually Tuesdays at 10:30,” is far more accurate than the sentence; “Gym is Tuesdays at 10:30.”
Observing the student in the target situation may also yield insight into what may be motivating his/her current responses. Does the student seem fearful? Does it seem like he/she is more sensitive to the situation than the other students? What does the student report about the situation? It is the student’s perspective which guides the author in selecting those aspects of a situation that should be included in a story. The student’s perspective determines the focus of the social story.
Social stories are comprised of three basic types of sentences: descriptive, perspective, and directive sentences. Descriptive sentences objectively define where a situation occurs, who is involved, what are they doing, and why. Perspective sentences describe the internal status of a person, their thoughts, feelings, and/or mood. Directive sentences are positively stated, individualised statements of desired responses. Directive sentences often follow descriptive sentences, sharing information about what is expected as a response to a given cue or situation. Directive sentences often begin with “I can try?” or “I will work on?” What follows is a sample of each type of sentence:
Sometimes a person says, “I changed my mind.” (descriptive)
This means they had one idea, now they have a new idea. (perspective)
I will work on staying calm when someone changes their mind (directive)
A good formula to follow for most social stories is to maintain a proportion of two to five descriptive and perspective sentences for every directive sentence in a story. In some cases, directive sentences may not be necessary. This ratio is maintained regardless of the length of a social story:
0 _ 1 directive sentence(s)
_____________ = SOCIAL STORY RATIO
2 _ 5 descriptive and/or perspective sentences
The most common mistake when writing a social story is to include too few descriptive and perspective sentences, and too many directive sentences. A social story should carefully describe what people do, what people say, and why. The more descriptive and perspective sentences that are in a story, and the fewer directive sentences, the more opportunity there is for a student to determine his/her own new responses to a situation. For some students a totally descriptive story will be confusing, leaving a student at a loss for what is expected. These students will need directive statements in the story.
A word of caution regarding directive sentences: Statements that are inflexible, or that require absolute compliance for a student to feel successful as a learner are avoided in social story. For example, statements that begin with “I can?,” of “I should?”? leave little room for error. These may result in a student feeling pressured to comply with specific responses right from the start.
Other guidelines for writing social stories assist authors in developing a social story. To ensure information is clear and easy to understand, each story is written well within a student’?s comprehensive level, using vocabulary and print size appropriate for the student’?s ability. A social story may not need illustrations to be effective. In fact, illustrations may too narrowly define a situation or may be distracting to some students. However, photographs or stick figures may be effective. Usually, social stories are written in the first person and the present tense, as though the student is describing events as they take place. (Sometimes a social story is written in the future tense, to describe and upcoming situation to make it seem less threatening. In this case, relating aspects of the anticipated event to a more familiar event, setting, or activity may be helpful.) Terms like always are avoided, instead using terms like usually or sometimes to ensure the accuracy of a story. A complete list of basic guidelines is available in Appendix A, page 8 of this paper.
l Comic Strip Conversations
A Comic Strip Conversation is an interaction between two or more people which incorporates the use of simple symbols, stick figure drawings, and colour. These drawings serve to illustrate an ongoing communication, and provide additional support to students who struggle to comprehend the quick exchange of information, which occurs in a conversation. By slowing down and visually displaying an interaction, a student can “see” and gain a sense of control and competence in a conversation. Materials for these conversations are simple and inexpensive _ often paper and markers, or a laminate marker board, are all that is needed. Comic Strip Conversations were first developed for use with children with disorders on the autistic spectrum, though their use is expanding to other special and general education students.
Comic Strip Conversations originated in part from the communicative drawings of a ten year old girl, Larkin. Larkin would draw to communicate frustrating situations to her mother, Teri, who would draw in return. In Teri’s words:
My daughter uses a kind of “social stories” process to talk her way through difficult situations. She draws or has someone else draw situations that have been confusing or distressing to her. We have learned to not only draw the disturbing situation she requests, but also to draw the sequence of events that leads to an appropriate conclusion to the situation.
Larkin takes great comfort from these drawings and can then use that information to help herself in future similar situations. We have taken her lead and used this method to help her develop coping skills. My drawings are always in response to Larkin’s drawings _ unless she is just too agitated about a situation and insists that I draw the situation for her _ then I still follow up with my conclusion _ sometimes accompanied by a cryptic “social story”?.
Building from Larkin’s example, a systematic approach to conversing with drawings was developed with the help of Matthew, and 11 year-old in the fifth grade. Materials, symbols, and instructional strategies for the Comic Strip Conversation approach were established and piloted. Modifications were made incorporating Matthew’s feedback and current social cognition and theory of mind research.
Comic Strip Conversations systematically identify what people say and do, and emphasise what people may be thinking. Each Comic Strip Conversation regards the thoughts and feelings of others as holding equal importance to spoken words and actions in an interaction. A set of eight symbols are used to systematically identify what people say and what they are thinking, and to represent basic, abstract conversationalist concepts, like interrupting
Considering students with autism have difficulty identifying the beliefs and motivations of others (Baron-Cohen, 1989; Baron-Cohen, 1990; Baron-Cohen, Leslie & Frith, 1985; Dawson & Fernald, 1987; Hobson, 1992), Comic Strip Conversations visually define the feelings and intentions of each speaker with colour. For example, teasing statements are written in red (teasing, bad ideas, anger), whereas a genuine invitation to play on the swings is written. in green (good ideas, friendly, happy). In this way, a student gradually learns to use colours to represent the emotional content of statements, thoughts and feelings. A colour chart serves as a reference for this process, although some students elect to create their own chart listing colours and associated meanings.
Experience indicates Comic Strip Conversations often provide insights into a student’?s perspective of a situation and serve as an excellent prerequisite activity to the development of a social story. A booklet, Comic Strip Conversations (Gray, 1994), discusses the approach in detail, including a discussion of possible materials and instructional techniques. (Appendixes contain a dictionary of conversation symbols, symbol study cards, and a basic colour chart.)
The Social Stories Unlimited ? approach is based on the belief that social understanding is an integral part of the development and learning of social skills. This approach is comprised of two interventions, social stories and Comic Strip Conversations. Social stories accurately describe social situations, and are often created in response to the needs and interests of an individual student and a specific situation. Comic Strip Conversations are the genuine “art of conversation”?, using symbols to visually depict social interactions and abstract conversational concepts, and colour to indicate the emotional content of statements. Together, they are tools designed to improve social understanding and social skills.
Picture Exchange Communication System (PECS)
The Picture Exchange Communication System (PECS) was developed 12 years ago as a unique augmentative/ alternative training package that allows children and adults with autism and other communication deficits to initiate communication. First used at the Delaware Autistic Program, PECS has received worldwide recognition for focusing on the initiation component of communication. PECS does not require complex or expensive materials. It was created with educators, residential care providers and families in mind, and so it is readily used in a variety of settings.
PECS begins with teaching a student to exchange a picture of a desired item with a teacher, who immediately honours the request. Verbal prompts are not used, thus building immediate initiation and avoiding prompt dependency. The system goes on to teach discrimination of symbols and then puts them all together in simple “sentences.” Children are also taught to comment and answer direct questions. Many pre-schoolers using PECS also begin developing speech. The system has been successful with adolescents and adults who have a wide array of communicative, cognitive and physical difficulties. The foundation for the system is the PECS Training Manual, written by Lori Frost, MS, CCC/SLP and Dr. Andrew Bondy. The manual provides all of the necessary information to implement PECS effectively. It guides readers through the six phases of training and provides examples, helpful hints, and templates for data and progress reporting. This training manual is recognised by professionals in the fields of communication and behaviour analysis as one of the most innovative systems recently developed.
Picture Exchange Communication System (PECS) via: Pyramid Educational Consultants, Inc.
A set of pictures used for communication often used for augmentative communication.
method of teaching language and social skills to children with disabilities.
Some of the issues are:
A number of children with indisputable Special Educational Needs are currently without a statement. Some L.E.A.’s are failing to issue statements due to a massive backlog. Others have active policies to reduce the number of children with Statements. This should be questioned and if explanations are not in the best interests of pupils, challenged.
Statements were designed to identify individual Special Educational Needs and to lay out the provisions needed to meet these needs. Statements are increasingly resource-led not needs led. This should be challenged.
Some statements are so vague that they are meaningless – they may prescribe the L.E.A. to make special provision but they may not make specific reference to what that entails. Some L.E.A.’s issue a “standard” statement for all pupils with Special Educational Needs. This should be challenged.
4.Statements and Therapies
The non-educational (but education related) provision as speech therapy or physiotherapy contained in Section 5 should be made legally enforceable. At the moment there is no basis for insisting that the L.E.A. must secure these services for a child.
An Addendum to Circular 22/89 empowered L.E.A.’s to provide speech and other forms of therapy but did not compel them to do so. It has been agreed that teaching a child to communicate is educational and once an authority specified speech therapy in a statement then it should be their duty to provide it. Few authorities currently do so.
This should be challenged.
Extracts from a Statement for a child aged 5 with autism Description of Needs. Statement Part 2
1 Merlin has autism, which is in most respects typical of classic Kanner autism and characterised by severe communication difficulties. In addition Merlin has significant learning difficulties. Merlin will not learn about core skills in social communication and play by simply observing other children.
2 Merlin is fit and energetic. His physical development is normal for his age. He will play with his parents and brother though his preferred play is somewhat babyish. He is happy at home but prefers to be left to his own devices.
3 Language Difficulties
Merlin has significantly impaired language skills. His expressive language is only functional and mostly concerned with his needs. He mainly uses single words, though he is able to use sentences of up to five words. Merlin occasionally uses immediate echolalic speech, and delayed echolalic speech forms a large part of his speech repertoire. His speech does not change in tone or pitch.
4 Communication Difficulties
Merlin’s non-verbal expression is not always appropriate. He does not use gestures to try to affect other people’s behaviour. He finds it difficult to interact with his peers and tends to play alongside his peers rather than with them. His eye contact is very limited with strangers.
5 Behavioural Difficulties
Merlin likes to maintain sameness in the routines of daily living. He engages in repetitive actions with objects. He sometimes flaps his hands. He sometimes has temper tantrums and has shown indiscriminate harmful behaviours towards others such as pinching or biting.
6 Learning Difficulties
Merlin has moderate learning difficulties. He shows poor ability to co-ordinate visual stimuli with motor tasks. He has significantly delayed symbolic play skills. He has very limited attention span and he is over sensitive to some sounds.
7 Motor Control Difficulties
Merlin has some awkwardness in his co-ordination of fine motor control.
Second section of part 3 of statement.
1 Merlin requires a learning environment that is geared to the needs of children with autism. All those working with him will need to have:
(a) An understanding of autism and how Merlin is affected as an individual.
(b) Expertise in the most appropriate methods for teaching and managing children with autism.
(c) Experience in developing and planning a programme of education for children with autism.
2 Merlin will need to be educated in a class with staffing ratios appropriate for children with severe communication disorders and sufficient to implement a TEACCH approach. This will normally be 1 adult to no more than 3 children. He will need constant adult support and a high degree of individual teaching every day as well as paired activities in small group sessions.
3 Merlin will need a highly structured individual teaching programme based on the TEACCH model.
4 Merlin will require an individual language and communication programme implemented throughout the day by all staff. This will require intensive one to one input from a qualified speech and language therapist experienced in working with children who have autism. For example five half-hour sessions a week.
5 Merlin will require an individual workstation designed to ensure minimal distraction.
6 Merlin will require regular and frequent use of computer with programmes designed for children with autism.
7 Merlin will require a therapeutic approach to increase his social interaction. This should include, for example, music therapy at least once a week.
8 Merlin needs implementation of conditioned relaxation methods to help him deal with difficult situations. He will also need an agreed firm and consistent behaviour management approach appropriate for a child with autism.
9 Merlin should be assessed by an occupational therapist to identify and implement an appropriate approach to improving his fine motor control.
I am writing to express my concern over the current arrangements for the care/education of my s/d who is Autistic and who is currently residing / being educated at ???????.
You will be aware that ???? has already ??????????? or has had problems /with or is encountering / etc etc.
He requires a structured programme of care / education to supplant the obsessional repetitive behaviour which he otherwise devises for him/herself.
I am very concerned that, at the moment, those who are charged with ????? care/ education at ??????? have neither the experience or qualifications to implement an effective programme, which would address the problems to which I have referred above.
Can you please therefore let me know what steps you propose to take in order to deal with this situation? I await hearing from you as a matter of urgency.
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Whilst every effort is made to ensure the accuracy of information we do not take responsibility for its use by individuals.