Autism Frequently Asked Questions Memo - Full Text

Date
March 29, 2008
Compiled by
John Wobus
Web Address
http://www.autism-resources.com/autism.faq.html
Web Address of alternate formats
http://www.autism-resources.com/faqformats.html
Corrections
Please send corrections to jwobus1@twcny.rr.com
Related info (Autism Resources web page)
http://www.autism-resources.com

Please read section below "What this FAQ memo is and what it isn't"

Contents

Autism FAQ - Mailing List, Archives, FAQ Memo, Web Page & Online Information

The AUTISM Mailing List

The AUTISM Mailing List (autism@lists.apana.org) is an open e-mail-based forum to discuss autism currently hosted by APANA, and administered by volunteers (autism-panel@hunter.apana.org.au). The list was previously hosted by St. John's University between 1992 and 2006. It includes parents, autistic people, researchers, professionals, students, and other people interested in autism. Discussion is lively: many weeks see 500 or more postings. It is a very good forum for posing a question for which you do not know who would have the answer.

There is a FAQ memo specifically about the list at http://lists.apana.org/autism

The mailing list is administered by the software, Mailman, which gives you the ability to subscribe, sign off, get past messages, stop mail during vacations, get the mail in a digest, and other things, all without the necessity of asking someone to do it for you. You can do these things at http://lists.apana.org/cgi-bin/mailman/listinfo/autism. Here are brief instructions for some of the more common requests it can handle:

Subscribing to the list
Fill out the form, giving at least your name and e-mail address, under "Subscribing to autism". Mailman will reply with a confirmation request including its own instructions. Once you are subscribed, you will receive all mail sent to autism@lists.apana.org, and any mail you send to that address will be sent to all the members of the AUTISM mailing list. You will also be given a password to use for changing your options and unsubscribing.
Signing off of the list
Enter your e-mail address in the appropriate box under "autism Subscribers", click the "Unsubscribe or edit options" button, enter your password, and click the "Unsubscribe" button.
Receiving the postings in digests
Once you are subscribed, you can adjust Mailman to send the postings to you as one long message per day instead of the usual one hundred or more. To set this up, act as above, but click the "Log in" button instead of the "Unsubscribe" button. Then, under "Your autism Subscription Options", click "On" next to "Set Digest Mode", and finally click the "Submit My Changes" button at the bottom.

Note: do not send requests to subscribe or sign off to the list itself. This practice results in thousands of people getting lots of extra messages. Be careful to send Mailman commands to Mailman, or contact the folks who run the list.

Who to e-mail about issues relating to the AUTISM mailing list

If you have a question about autism, you can join the list and ask it to the list members. If you need to contact someone about an issue with the list itself, you can contact the list administators, (autism-panel@hunter.apana.org.au).

AUTISM Mailing List Archives

The Mailman software keeps an archive of all the messagesever posted to the AUTISM Mailing List, and you can make it search and retrieve messages from the archive. Instructions and a password on how to do this are available from the list owners upon becoming a member of the list.

After the list's migration from St. John's University in January 2006, the archives can no longer be searched via e-mail.

Other Mailing lists

See section "Initiatives" below about ANI-L, and other lists.

Frequently Asked Questions Memo (this memo)

An introduction to autism to answer questions that people frequently have about it. The memo began in early 1993 and has grown as of late 1998 to over 7500 lines of text. The material is largely factual material posted, sometimes repeatedly, on mailing lists that discuss autism. If people ask about it, it belongs here. Web address of FAQ Memo:

http://www.autism-resources.com/autism.faq.html

Other versions of this memo are available. In one, recent changes to the memo are marked; in the other, the memo is broken into smaller pages of 500 lines each for people with web browsers that cannot handle 3000+ lines. Both of these are at the "Autism Resources" web site, specifically through the page with URL:

http://www.autism-resources.com/faqformats.html

What this FAQ memo is and what it isn't

The nature and treatment of Autism remains sufficiently controversial that in order for a FAQ memo to avoid giving you just one viewpoint, it cannot answer the difficult question: "which treatment really works". And the FAQ memo certainly doesn't give medical advice. What a FAQ memo does is document facts such as definition of terms, references to books, organizations, and treatment programs, even "who is saying what about what"; essentially, background material both to help you understand what is being said in the online discussions, in books, in talking with professionals, and in understanding what people are saying when they tell you about the best methods. The FAQ memo avoids making judgements about treatments (with one big exception: it gives no credence to the idea popular in the 1950s that Autism is caused by poor parenting), but this in itself skews its message: by documenting the most unlikely treatments along with the mainstream ones, it can induce the reader to give them undue credit. Please keep this in mind.

Also, the FAQ memo is certainly imperfect both in its accuracy and its avoidence of opinion. But it is constantly improved through the suggestions and corrections of its readers.

Web Page & Other Online Information

In general, this FAQ memo does not list online resources: rather than fill this memo with URLs for you to type in, I have assembled them in one convenient web page to compliment this memo. The web page (which includes this FAQ Memo) is called "Autism Resources" and is at:

http://www.autism-resources.com/

Autism FAQ - Definition of Autism

The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV):

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 nonverbal behaviors
    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 behavior,
    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, nonfunctional
    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. The disturbance is not better accounted for by Rett's Disorder
    or Childhood Disintegrative Disorder

The following definition is from the Autism Society of America:

AUTISM is a severely incapacitating lifelong developmental disability that typically appears during the first three years of life. It occurs in approximately fifteen out of every 10,000 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.

The symptoms are caused by physical disorders of the brain. They include:

  1. Disturbances in the rate of appearance of physical, social and language skills.
  2. Abnormal responses to sensations. Any one or a combination of senses or responses are affected: sight, hearing, touch, pain, balance, smell, taste, and the way a child holds his body.
  3. Speech and language are absent or delayed while specific thinking capabilities might be present.
  4. Abnormal ways of relating to people, objects and events.

Autism occurs by itself or in association with other disorders which affect the function of the brain 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 behavior. Special educational programs using behavioral methods have proven to be the most helpful treatment.

AUTISM IS TREATABLE -- Early diagnosis and intervention are vital to the future development of the child.

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 30s and 40s, 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 (at least in the USA) centers 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 such 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.

Autism FAQ - Advice for the parent who just discovered their child is autistic

I solicited and received such advice on the mailing list and received a number of replies which are all listed verbatim in a separate memo: "Advice to Parents who Discover their Child is autistic" (URL: http://www.autism-resources.com/advice-to-parents.html). This is a very brief summary of some of the items:

Some Things To Do

Books

Michael Powers's Children With Autism: A Parent's Guide has a good reputation, but there are some newer books aimed at parents. Another book with a good reputation is Elizabeth K. Gerlach's Autism Treatment Guide from Four Leaf Press. There are a number of books describing parents' experiences with autism and though some may be slanted a particular kind of treatment, probably all have value in allowing you to share the experience of other parents. Catherine Maurice's Let Me Hear Your Voice is one example.

Treatment & programs

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.

Organizations

In the USA, the national society is the Autism Society of America (ASA). It has local and state chapters, so it may help you to find a local support group. Another organization of value is the Autism Research Institute (ARI), which includes publications.

Things to watch out for

Autism FAQ - Characteristic Behavior

Autistic children display unusual behavior. A typical autistic child's behavior is likely to include some of the following:

There are other conditions which sometimes coincide with autism:

Autism FAQ - Similar Conditions

There are a number of diseases 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 diseases:

Deafness
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.
Galactosemia
Inborn error in carbohydrate metabolism. [Inability to metabolize galactose?]
Heller's Disease
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"
Also Acquired Childhood Epileptic Aphasia. Very rare disorder. Typical profile: normal development and age appropriate language first 3-7 years; Loss of receptive language while retaining some expressive language; "Telegraphic" speech--few verbs; Suspicion of deafness; Child frustrated, puzzled by change in himself; Autistic-like behaviors; normal or above normal non-verbal IQ score; abnormal EEG, with or without seizures. Some practitioners suspect that some cases of Childhood Disintegrative Disorder or "late outset" autism may be Landau-Kleffner Syndrome.
PKU "Phenylketonuria"
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.
Rett's Syndrome
a neurological disorder that occurs only in girls. Unlike autism, girls initially show normal development, then revert. The initial symptoms include some that are associated with autism. From DSM IV: 

    DIAGNOSTIC CRITERIA FOR 299.80 RETT'S DISORDER   (females only)

    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
    engagment early in the course (although social interaction often
    develops later) (4) appearance of poorly coordinated gait or trunk
    movements (5) severely impaired expressive and receptive language
    development with severe pyschomotor retardation.
Childhood Disintegrative Disorder
Much rarer than autism. I've seen references which treat this as a synonym for Heller's Disease (see above). From DSM IV: 

    DIAGNOSTIC CRITERIA FOR 299.10 CHILDHOOD DISINTEGRATIVE DISORDER

    A. Apparently normal development for at least the first 2 years
    after birth as manifested by the presence of age appropriate verbal
    and nonverbal communication, social relationships, play and adaptive
    behavior.

    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
    behavior (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 nonverbal behaviors, 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 behavior,
    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.
Tourette's Syndrome
a condition thought to be genetic that causes uncontrollable motor and/or vocal tics. A major longterm study is being conducted by David Cummings, who published a thick book on the genetic links between various neurological disorders. (Not easy reading.)
Obsessive-compulsive disorder
Obsessions are thoughts or images that are involuntary, intrusive, and anxiety-provoking. Compulsions are impulses to perform a variety of stereotyped behaviors 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 (Judith Rapaport). Clinical OCD has easily categorized 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.
Asperger's Syndrome
Similar to Autism except that language development is normal. In some people's minds, the same thing as high-functioning Autism. From DSM IV (p77): 

    DIAGNOSTIC CRITERIA FOR 299.80 ASPERGER'S DISORDER

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

    (1) marked impairments in the use of multiple nonverbal behaviors
    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 behavior,
    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, nonfunctional
    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
    social, occupational, 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 behavior (other than social interaction), and
    curiosity about the environment in childhood

    F. Criteria are not met for another specific Pervasive
    Developmental Disorder of Schizophrenia
Nonverbal learning disabilities
Semantic-pragmatic speech disorder (Semantic Pragmatic Disorder or SPD)
A communication problem with mild autistic symptoms and problems generalizing.
Schizophrenia
a mental illness which can result in behavior 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 or PDD/NOS or PDD-NOS "Pervasive Development Disorder/Not Otherwise Specified"
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 DEVELOPMETAL 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 nonverbal communication skills, or when the stereotyped
    behavior, interest and activities are present, but the criteria are
    not met by a specific Pervasive Developmental Disorder,
    Schizophrenia, Schizotypal Personality Disorder or Avoidant
    Personality Disorder. For example, this category includes "atypical
    autism" - presentations that do not meet the criteria for Autistic
    Disorder because of late age at onset, atypical symptomatology, or
    subthreshold 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.
Childhood aphasia
?
Receptive Developmental Dysphasia
?
Celiac's disease
Gluten intolerance (?)
Fragile-X Syndrome
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 are in the middle of the continuum, with a combination of ADD and autistic features. These kids often have "soft" neurologic signs (incl. fine and/or gross motor coordination 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 childs 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 childrens behaviour.
CMV
?
Tuberous Sclerosis
?
Hyperlexia
a disorder consisting of precocious reading development, disordered language acquisition and social and behavioral deficits. It is a matter of discussion whether to consider it a type of autism or asperger's syndrome.
Manic Depression
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 Center, Durham, NC. The findings were reported in the May and August 1994 issues of "Developmental Medicine and Child Neurology."
Angelman Syndrome
resembles autism only superficially since Angelman kids are profoundly retarded and (somtimes?) don't exhibit the lack of empathy, eye contact, etc. typical of autism. It is caused by a particular defect in chromosome 15 which can 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. Besides extreme retardation, other symptoms include low muscle tone, recurring seizures, sleep disorders, gastrointetinal problems, and slow development. Another syndrome caused by a defect in chromosome 15 is Prader-Willi.
Smith-Magenis Syndrome
has a lot of autistic characiteristics. Caused by a particular defect in the 17th chromosome.
Klinefelter Syndromes
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 behavior.
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.
Lactic Acidosis
tendency to accumulate of lacitic acid in the blood. It's connection with autism is that it has been found to coincide with autism more than chance would dictate.
Prosopagnosia
The inability to recognize 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 colored glasses. See Irlen Lenses under treatment.
Turner's syndrome
A syndrome in females where they are missing one of their two X chromosomes.
Carnitine Deficiency
A condition which can have symptoms similar to Reye's Syndrome. It can be caused by genetic factors.

Others I've heard 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, Aphasia, Schizoid Personality Disorder, Porphyria (?), Bi-Polar Affective Disorder, Defiant Disorder, Spacial Planning Disorder, Neurofibromatosis, Candida Albicans.

Autism FAQ - Theories and Causes

There is no theory of the cause of autism which everyone has found convincing. There may be multiple causes. Thus we will review some of the proposed causes.

Most researchers are absolutely convinced that the cause is biological rather than psychological. Bernard Rimland in his book Infantile Autism (1965) cited the following evidence for a biological genesis and against the idea that parents cause their children to be autistic:

  1. Some clearly autistic children are born to parents who do not fit the autistic parent personality pattern.
  2. Parents who do fit the description of the supposedly pathogenic parent almost invariably have normal, non-autistic children.
  3. With very few exceptions, the siblings of autistic children are normal.
  4. Autistic children are behaviorally unusual "from the moment of birth."
  5. There is a consistent ratio of three or four boys to one girl.
  6. Virtually all cases of twins reported in the literature have been identical, with both twins afflicted.
  7. Autism can occur or be closely simulated in children with known organic brain damage.
  8. The symptomatology is highly unique and specific.
  9. There is an absence of gradations of infantile autism which would create "blends" from normal to severely afflicted.

Points 4 and 9 are not generally accepted now, perhaps because of the broadening of the condition's definition over time, and perhaps because of additional observation & data collection.

There is still controversy over neurological differences in the brains of autistic people and the rest of the population. However, it does appear from evidence obtained through autopsies, MRI and PET scans that there are subtle cellular changes in the autistic brain. The increased incidence of seizures (20-30% develop seizures in adolescence) also points to neurological differences.

Some specific theories as to the cause of autistic symptoms:

A phrase you will sometimes hear is "theory of mind" or "the theory of mind hypothesis". This is not so much a supposed cause of autism as an assertion as to its nature. The basic idea of the hypothesis is that autistic people lack an awareness of other peoples' minds that typical people start developing at a relatively young age, i.e. the autistic person doesn't so readily develop theories about what is going on in other people's minds. A corollary is that an autistic person's awareness of other people's minds is something that is developed intellectually through their own efforts. Furthermore, adherents of this theory suppose that some or all the other typical characteristics of autism stem from this one main deficit. The hypothesis is explained in some books (some have "Theory of Mind" in the title, also Uta Frith has written on it) and simple tests have been devised to test a person's awareness of other minds.

Autism FAQ - Treatment

See also the comments below under "Controversies".

There is no standard, universally accepted treatment of autism; in fact, every single method has its detractors. General approaches may be summarized as follows:

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 immediately because a significant number 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, behavioral, etc), if done intensively, produces some positive results. There are rare cases of recovery claimed by every educational method. In addition, some methods have been reported by parents as producing negative results.

Behavioral 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 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 well-known treatments.

Vitamin B6
Some have attributed some success in reducing the characteristic symptoms of autistics 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 behaviors. To make it usable with small children, at least one company provides it in powder form.
dimethylglycine (DMG)
Bernard Rimland pursued this line of investigation. Suggestions are that it sometimes helps autistics 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. Gluten intolerance is generally indicated by loose stools and/or a craving for bread and pasta. 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.
Fenfluramine
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 behavior of such autistics (or other autistics). Some success was reported. Dr. Edward R. Ritvo pursued this line of research.
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.
Piracetam
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.
Tomatis Method
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 (SIT)
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 who have learned the method.
Holding Therapy
Martha Welch is the primary proponent who argues that autism results from a failure to bond with the child. The child is forcibly held by the mother. 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.
Behavioral Therapy
(also "Lovaas Method", "Behavioral Intervention", "Applied Behavioral Analysis" (ABA), "Discrete Trial Training" (DTT)) Use of behavior modification (a.k.a. operant conditioning) which was originally developed by B.F. Skinner (a prime developer of Behavioral 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 and Maurice's Behavioral Intervention for Young Children With Autism are a widely used handbooks for this type of method. Behavioral 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 "Behavioral 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 dehumanizing and severe. The method also arouses controversy in cases where adherents use of punishment & aversives to decrease self-destructive behaviors. (See more complete citations to the above-mentioned books and paper in the section below: "Bibliography").
Aversives
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 behavior 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 behavior 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".
Irlen Lenses
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 popularized by Donna Williams (author of Nobody Nowhere and Somebody Somewhere).
Prism Lenses
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 nonverbal 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.
Anafranil (cloripramine)
a tricyclic antidepressant which may relieve some symptoms of autism.
Desipramine
a tricyclic antidepressant.
Zoloft (sertraline)
Second-generation antidepressant (SSRI, or selective serotonin reuptake inhibitor). Studies on SSRIs reveal significant improvement in perseverative behaviors and some other autistic spectrum symptoms (social withdrawal, behavioral rigidity, etc.).
Ritalin (methylphenidate)
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".
Dexadrine
?
Ritalin SR
?
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.
Psychology
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 hypothesize 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 Behavioral Therapy) clearly fall under the heading of Psychology, yet are certainly not predicated on any "bad parenting" theory.
Psychotherapy
See "Psychology" above, and "History" section below.
Psychodynamic 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 neurons and "reuptaken" by neurons.
Prozac (fluoxetine)
Also an SRRI (see Zoloft). Studies have been done.
Clomipramine
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.
Clonidine
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.
Dilantin (phenytoin)
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.
Lithium
a salt used primarily to treat bipolar disorder, also used in other, possibly related conditions including autism.
Naltrexone
? (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 behavior of some autistic individuals sometimes resembles the behavior 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 endorphines to which they are addicted (like joggers to joggers' high which is produced by endorphines). 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 endorphines. (Morphine apparently is very close in structure to and simulates the endorphines.). 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.
Play Therapy
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.
Melatonin
A hormone that has a role in the immune system and in controlling ones sleepcycle. 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 things.
Haldol (haloperidol)
a neuroleptic which is used to abate symptoms of psychosis.
Trexan
the trade name for Naltrexone.
Vision Integration Therapy
?
Craniel Sacral Therapy
a form of myofacial release performed by physical therapists and osteopaths.
Cognative approaches
?
Luvox (fluxovamine)
Antidepressant which is being used for obsessive compulsive disorder and in some cases autism.
Prednisone
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 Desensitization) shots
Sort of homeopathic brew of stuff that your allegric/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.
Doman-Delacatto
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.
Dolphin Therapy (or Dolphin-Assisted Therapy)
I can't give details, but involves being in a tank with a dolphin or dolphins. Used for Autism, Down's Syndrome, ADD, Muscular Dystrophy and spinal cord injuries among other disabilities. Researchers in the field include Dr. Betsy Smith (Florida International University) and Dr. John Lilly.
Therapy Dogs
experimental therapy to see if teaching children with disabilities to learn typical human/pet interaction is of use.
Risperdol (risperidone)
(Risperdal?) anti-dopanine agent which also works against serotonin. A neuroleptic.
Epsom Salt Baths
see Phenolsulphertransferase (PST) deficiency in section "Theories and Causes".
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
?
Cranio-Scaral Therapy
Involves unlocking certain areas in the body that are blocked in order for the cerebral spinal fluid to flow correctly. Among the practicioners are some chiropractors.
Tegretol
Drug used to prevent seizures, also sometimes used for autistic symptoms.
Nizoral (ketoconazole)
Anitfungal medication used in the treatment of candida and other yeast infections.
Nystatin
Anitfungal medication used in the treatment of candida and other yeast infections.
Folic Acid
?
Eliminating dietary yeast
?
Music Therapy
?
Intravenous Immunoglobulin (IGIV, IgIV, or IVIG)
IV solution something like a blood transfusion, but uses only a solution made from donated blood rather than whole blood. Used to address certain immune-system problems.
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.
Adderall
?
Imipramine
?
Desyrel
?
Clonazepam (Klonopin)
?
Dipiperon
Drug used to treat hyperactivity.
MST Surgery
Surgery typically done for LKS children, but has been used with autistic children for whom intractible seizures appear to be a cause.
Secretin infusion
Experimental treatment reported to have helped autistic children. Secretin is a hormone involved in digestion.
Floortime
Intervention method developed by Stanley Greenspan for developmentally disabled children including autistic children. Stanley Greenspan has a series of books including The Challenging Child and The Child With Special Needs. (See more complete citations to the above-mentioned books and paper in the section below: "Bibliography").

Autism FAQ - Educational Methods

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 combination 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 (ie. Montessori materials) for students who learn well through their tactile senses.

A general comment: autistic people don't generalize 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 behaviors.

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 catagories allows perfect classification of each approach/activity/treatment/educational method/etc.

Whole Language Therapy
?
Occupational Therapy
?
Physical 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. 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 autistics to make it practical to set up specialized facilities. It was soon observed that autistics in such situations in general did better than autistics in tailored classrooms, and the policy of "mainstreaming" was born. Theory has it that separating autistics from a normal environment just exacerbates their problem. US law says that children with special needs must be educated with as little restriction as necessary and school systems have responded by placing autistics (and other children with special needs) in normal classrooms as much as practical.

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 autistics--the choice is often whether the autistic is mainstreamed, or in a "general-purpose special-education" classroom, known in the business as a "self-contained classroom".

Sign
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 practicioners 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 thusly: 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.

Daily Life Therapy
a method developed in Japan and imported into the USA. It includes elements normally found in the education of autistics, 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).
Picture Exchange Communication System (PECS)
a functional communication training approach that emphasizes teaching students to give a picture of something they desire to another person in exchange for that item. Pioneered by Andrew Bondy and Lori Frost of the Delaware Autistic Program. Considered a kind of augmentative communication.
Meyer-Johnson pictures
A set of pictures used for communication often used for augmentative communication.
Milieu Training
method of teaching language and social skills to children with disabilities.

Autism FAQ - Advocacy

There are a number of issues on which a number of autistic people and parents of autistic people take an active role. Naturally, there are those who feel strongly about a particular hypothesized cause or a particular treatment or educational method. On such issues, one will find advocates on various sides of the issue. However, there are other more general issues, on some of which there is more of a consensus. This section will list some of the issues & positions that autistic people and parents of autistic people are active in. Some of the issues are specific to autism, but many are relevant to other disabilities.

Laws on education of the disabled

The Individuals with Disabilities Education Act (IDEA) and other laws that protect the disabled come up for renewal and/or are reviewed with an eye toward amendment on occasion. Many disabled people and parents of disabled people watch such proceedings closely and make their opinions known to their representatives.

Inclusive Education

Improving and even maintaining quality of education of the disabled is a continuing struggle even with federal and state laws. Since education in the USA remains largely under local control, many parents of the disabled find themselves acting as their own advocates to make sure the laws are upheld given the tendency of some localities to make decisions based on the idea that the expense of educating the disabled is more than they can handle.

One of the trends in educating the disabled for the past few decades has been to include them in classrooms of typical students. Many parents and disabled people have this as a goal.

Funding for research on autism

Despite the fact that many of the general public find autism of some fascination, a good case can be made that private and government funding accorded research into autism is much less than that of some diseases and conditions that are rare relative to autism.

Misplaced blame

See section "History" about how parents used to be blamed for Autism. It was not that long ago that that was happening and people without knowledge of autism as it's currently preceived may well run across material from those times. The activism necessary to counter such thinking is thankfully much reduced by those who worked hard on the issue in the 1960s.

Group homes

The general trend in the housing of the disabled who cannot live independently has been away from the idea of large institutions toward the idea of group homes located in the community. Among the reasons cited:

There are on occasion drives to allow a group home in a neighborhood. If the neighborhood has never had one, people are naturally suspicious and unsure of what to expect. On many occasions, after the fact, neighbors of group homes have been willing to testify to the positives of having a group home in the neighborhood.

I haven't mentioned other living options aside from group homes: many disabled live independently, and many live with only a minimum of assistance. The real issue being pressed goes beyond group homes: it encompasses the provision of appropriate housing and related services for all the disabled.

Autism FAQ - Controversies

See also section below, "History", for older controversies.

These are subjects which can stir up debate on the AUTISM mailing list and would presumably do so in any diverse group of autistic people and people involved with autism. If you have to deal with autism, you should at least be aware that there are such points of controversy. In fact, it is likely the that no matter what this memo says on these issues, there will be complaints.

Is Autism a Disability?

Well-adapted autistic people and autistic people who are close to being sufficiently adapted to function independently have naturally brought up the question whether Autism should be considered a disability, or whether it should simply be considered a somewhat different kind of personality. On the other hand, there are certainly autistic people who need constant supervision and help simply to get through life. A related and dangerous question that people sometimes ask themselves is: "if my or someone else's autism could be 'erased', would I agree to that?"

Inclusion in education and society

How much? How much effort? What can society afford? How can society deny basic rights to individuals?

How to approach the treatment of Autistic children

See section above: "Treatment".

There are several well-developed and widely used approaches the treatment of Autism and education of autistic children that are quite different, and parents of an autistic child might find themselves involved in such a program without being fully aware of the alternatives or the general opinions on the approach. In general, each of the methods of treatments has its enthusiastic supporters (or it wouldn't exist) and its detractors, thus there is a "camp" associated with each treatment.

I shall attempt to list some major "camps" associated with dealing with autistic children. As I said, in each case, you might find yourself among people who believe a particular method is generally proven and will advise you to give their approach strong consideration. But happenstance might have placed you among other people who consider the very same approach to be of limited value at best.

I could say that "there is no answer", but I cannot support such a claim: one of these groups of people may well turn out to be right and others wrong. One particular approach might one day become well-established as best. But there are other possibilities: perhaps different approaches will be shown to be effective for specific kinds of Autism stemming from different underlying causes; perhaps no single approach will be best for the majority of Autistic children.

What I can say is that universal agreement on approaches to treatment has not been reached at this point despite what some people might tell you. You may choose to adopt one approach whole-heartedly. But you ought to at least be aware that there are likely to be sensible people who disagree with it and would suggest alternatives. It is not easy making such a choice.

Some approaches which have large circles of adherents:

The causes of autism

Along with controversies on the treatment of autism are those caused by theories as to what causes it. There are people who get very excited one way or the other about the following questions:

For each of the first two questions, there are vocal people who say "yes". For the last question, there are vocal people who say "no".

Theory of mind

While not a cause of autism, the "theory of mind" rubs some people the wrong way.

Research funding

While there is naturally a consensus among parents and professionals that more research would be helpful, there is some controversy as to what kind of research should be done. To some degree, this follows the controversey over the causes of autism, particularly in the area of genetic causes. Some say that research has already explored this area sufficiently and liken such research to other controversial genetic research areas such as research into the genetic causes of social behavior. The impetus to look for genetic causes to autism certainly is partially motivated by the perception that research into psychological and educational areas is often both expensive and inconclusive, in contrast to genetic research, which, when it does turn up some information, it is often conclusive.

Reports of abuse through Facilitated Communication

Just as the issue of recovered memories of abuse has raised controversy, the fact that some people disbelieve the reliability of communication produced through facilitation leads to controversy in the use of it as evidence for the purposes of investigations of potential abuse and as legal evidence in abuse trials.

The use of aversives to manage behavior

On one side of the issue is the necessity to deal with atypical behaviors ranging from benign but unusual to dangerous; on the other side is a history of misuse of aversives as well as suspected misuse of aversives, the assertion of some that other methods achieve the goals as well or better, and the fundamental issue of human rights. There are dangerous behaviors, there are people who would be able to function more freely in society if an effective way is used to teach them to manage their own behavior, and there have been people who think that such benefit is worth the use of aversives. There are people who believe aversives are never helpful; there are people who believe that if such methods are sanctioned, that the sanction will be abused, that someone, somewhere will be overusing the methods. And there is a lot of suspicion on the subject. See also "Treatment".

Autism research and support organizations

Among the research and support organizations in the USA are ASA, ARI, CAN, and NAAR, and there are more. I hate to air the autism research/support community dirty laundry and don't know all the details and often ignore what I hear, but it is likely that the multiplicity of organizations reflects more than a multiplicity of functions, it also reflects some of the conflicting views on approaches to treatment, research and support, and perhaps on occasion it simply reflects politics within the autism research/support community. Discussions on the online forums will on occasion air & reflect these disagreements.

Having said that, there are perfectly valid functional reasons for a multiplicity of organizations, e.g. orientation towards a particular kind of support or research. While having them all within one friendly unbrella organization might make some people more comfortable and perhaps make all those organizations easier to find, there are also advantages to independence.

How much public funding should be dedicated to special education

Is (such-and-such a person) autistic?

The "Rainman" donation to the Autism Society of America

This is a short explanation of a brouhaha that you might read reference to. Bernard Rimland served as a free technical advisor for the movie Rainman. Dustin Hoffman responded with a donation which was sent to the Autism Society of America, who spent the money. Bernard Rimland claims that the donation was intended to be sent to the Autism Research Institute but was sent to the Autism Society of America by mistake. As of 5/97, there is a suit in court on the subject.

I have no information on the ASA's side of the case, but Bernard Rimland has shown letters from Dustin Hoffman and Barry Levinson (director of Rainman) that support his claim.

Autism FAQ - Coping

Where Autistic People generally live

In general, autistic people have the same living options as people with other disabilities, which ideally are matched with the individual's capabilities.

Children: While there were times in the past when autistic children would likely be located at an institution, today they almost invariably reside with their parents.

Respite: Families caring of a disabled person can be tied down to a much greater extent than than other families. Autistic children are individuals and the amount of supervision autistic children require varies, but in general, there is an extra burden on the parents which in many cases is severe. Providing the care and supervision can possibly require as much effort as would an additional full time job.

Respite service is typically provided by government agencies to give such families an occasional break from the responsibilities. It may consist of providing someone to look after the child for a few hours, or it may be a group home (see below) set up to take the child for a weekend on occasion.

Adults: Autistic adults unable to cope with their own residence also were likely to live in an institution such as a state-run facility. Alternatively, they might live with relatives.

In place of institutions, now group homes and assisted living are more generally used. A group home might have 4 permanent residents, with two staff members for most of the waking hours and 1 staff member while the residents sleep.

Assisted living is for autistic people able to cope under less supervision than a group home provides. The exact situation would be tailored to the individuals, but an example would be two autistic people sharing an apartment, visited by a representative of social services daily.

Those families who take care of adult autistic family members might make use of respite services (see above).

Other aids to living and communication

For basic communication, nonverbal autistic people are sometimes taught sign language, or to use communication boards or electronic communication devices such as the Cannon Communicator. The latter is similar to a Brother labelmaker, being an electronic device designed to allow the disabled who can type to communicate during daily life.

Facilitated Communication (see under "Educational Methods") can be used in conjunction with a Canon Communicator or communication board, but in other cases, the individual may be able to point or type independently.

The Internet has been a boon to some autistic people, opening avenues of communication that are more suited to their abilities than face-to-face communication.

Social Signal Dogs are rarely used but have been discussed on the list. It is a working dog, similar to a seeing eye dog that assists an autistic person in their daily life.

Autism FAQ - History

It has been presumed that before the discovery of the pattern of symptoms now known as autism, that people did exist with the syndrome, and were lumped together either with the mentally retarded or the insane. We might expect to have inherited sufficiently-detailed descriptions of such people that we would be able to see a pattern suggesting autism among them, but there have not been many descriptions that suggest autism. One such description is of a boy found in the 19th century and named Victor. At the time, some assumed he had grown up without human contact in the forest. The story was recorded in the book The Wild Boy of Aveyron.

Discovery

Leo Kanner published his first paper identifying autistic children in 1943, asserting he had noticed such children since 1938 (see reference to Kanner, "Autistic Disturbance of Affective Contact", see Selected Articles section below). 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. Thus he invented a new category, which he called Early Infantile Autism, which has since sometimes been called Kanner's Syndrome. Hans Asperger (see section Well Known Researchers and Practicioners and reference to Asperger, "Autistic Psychopathy in Childhood" in Selected Articles section below) essentially made the same discoveries at the same time, independently of Kanner, but the patients he identified all had speech, so the term Asperger's Syndrome or Asperger Syndrome is often used to label autistic people who have speech.

The word "autism"

Note that before before Kanner incorporated it into his label, the word "autism" already had a meaning: "escape from reality" (coined, I think, by Eugen Bleuler in 1912, who had already coined the term "schizophrenia"). Kanner borrowed Bleuler's term either because Kanner indeed believed the children were trying to escape from reality, or he felt that whatever was going on, the children gave that impression. Today, one hears the word autism in the context of Kanner's syndrome much more often than one hears it used with Bleuler's original meaning, and someone who regularly deals with Kanner's syndrome might misunderstand when the word is used in its original sense. For example, if a psychologist says "I sense some autism in this patient," s/he could be using established terminology to say the particular patient is escaping from reality, yet s/he would not necessarily be talking about someone who suffers from the developmental disorder that this FAQ is about.

Older Theories/Origin

After Kanner and Asperger's discovery, 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 this syndrome and this observation: 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 behavior; the other is that Autism is an extreme instance of a genetically-inherited personality trait that was present to a milder extent in such observed parents.

Older Treatments

Based upon psychological theories of the basis of autism, some children were removed to their parents' home 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 put forward) but no clear-cut success that would lead to universal, long-term adoption of the methods.

Changes in meaning of the word autism after Kanner

Above and beyond the distinction between the concept that Bleuler coined the word "autism" to label 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. 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 some of the difference in the reported rates of occurrence, though some now claim that it doesn't fully explain it.

Other terms that have been applied to what we now call "autism". Childhood schizophrenia, infantile autism, Aspergers Syndrome, Kanner's Syndrome. Probably lots of autistic people used to be termed retarded, or schizophrenic, though obviously those terms (as then used) were not as specific as our current "autism" label.

Politics

The parents of autistic children are naturally less-than-objective about their own roles in the cause of their childrens' conditions. In the 60s, this was fueled by a widespread belief that the condition was caused by the way the parents treated their children. When evidence to the contrary (see section Theories) was uncovered yet not widely known, parents had to act as their own advocates. Parents still sometimes find themselves in the position of trying to explain how the fault does not lie with themselves since the general public's information on autism is still sometimes dated or wrong.

Controversies

There remain a lot of controversies about treatment and probably have been from almost the first. See section above, "Controversies".

Past Articles/Books

This article and book, written by a prime advocate of the Freudian theory of the cause of autism were highly influential in attitudes about Autism for a long time.

Bruno Bettelheim.
"Joey: A 'mechanical boy.'" Scientific American, 200, 116-127.
Bruno Bettelheim.
The Empty Fortress: Infantile autism and the birth of the self (Collier-MacMillan, 1967).

Autism FAQ - Glossary of terms and acronyms

If you read messages on the AUTISM list, you may well run into terms or acronyms that aren't explained. If the term/acronym you are looking for isn't listed here, you might scan the following sections: "Similar Conditions", "Treatment", "Educational Methods", "Organizations and Services", and "Initiatives".

(Note that messages posted on the AUTISM list will sometimes include some of the well-established e-mail acronyms (e.g. BTW="by the way", IMO="in my opinion", IMHO="in my humble opinion", LOL="laughing out loud", ROFL="rolling on floor laugning, FWIW="for what its worth"). There are many books on e-mail, the Internet, and online services that provide lists of these.)

For other glossaries, see http://www.autism-society.org/packages/glossary.html, http://www.hyperlexia.org/acronyms.html, http://web.syr.edu/~rjkopp/abbreviations.html, and http://www.alliancelink.com/users/autism/

AAPEP
? (related to "PEP", see below)
AAC "Assistive Augmentative Communication"
A speech-language therapists' term for communication using a picture board or recorded messages activated by buttons, etc.
ABA "Applied Behavior Analysis"
Acronym in common use by adherents of some behavioral techniques to refer to a kind of careful analysis and tracking of behavior including its cues and consequences.
ABC "Applied Behavior Consultants"
Organization centered in Sacramento sometimes discussed on the AUTISM mailing list.
ABC "Autism Behavior Checklist"
Diagnostic device for autism.
AC "Autistics and cousins"
people with autism and those who may not be formally diagnosed but may have some elements of atypical thinking. As far as I know, this usage is confined to the Autism list.
ADA "Americans with Disabilities Act"
USA law that ensures rights of persons with disabilities with regard to employment and other issues.
Adaptive PE "Adaptive Physical Education"
?
ADD "Attention Deficit Disorder" (see "Similar Conditions")
ADHD "Attention Deficit Hyperactivity Disorder" (see "Similar Conditions")
ADI "Autism Diagnostic Interview"
a diagnostic scale for autism being developed by the Medical Research Council in London. Fairly technical: more precise than CARS.
ADOS "Autism Diagnostic Observation Scale"
(or "Autism Diagnostic Observation Schedule"?) Fairly technical test.
AGRE "Autism Genetic Resource Exchange"
Program run by CAN foundation (see "Initiatives") to collect & review DNA samples.
AIA Network "Autism, Intolerance & Allergy Network
(see "Feingold Association" under "Organizations and Services")
AIT "Auditory Integration Training" (see "Treatment")
ASLA "Autism Society of America, Los Angeles Chapter"
They hold an annual conference often referred to as the ASLA conference.
Analog condition (conditioning?)
Term for some behavioral methods such as the Lovaas method used by developers of the Natural Language Paradigm.
ANC "Autism National Committee" (see "Organizations and Services")
ANDI "Autism Network for Dietary Intervention" (see "Initiatives")
APD
?
aphasia
loss of ability to use or understand words.
apraxia
a neurologically-based disorder which occurs in adults, often (but not exclusively) as a consequence of stroke. The person has difficult sequencing movements in the service of a goal. e.g., he may have the ability to raise his arm and to wave his hand, but not when he consciously intends to do so. Apraxia may be specific to speech (e.g., "apraxia of speech") or to the movement of other body parts (e.g., "limb apraxia").
apraxia of speech (see definition of "apraxia")
apraxic
having to do with apraxia or a person with apraxia.
ARI "Autism Research Institute" (see "Initiatives")
ARRI "Autism Research Review International" (see "Bibliography")
AS "Asperger's Syndrome"
ASA "Autism Society of America" (see "Organizations and Services")
ASD "Autistic Spectrum Disorders" (see below)
ASL "American Sign Language"
atypical autism
A general term for conditions that are close to but don't quite fit the set of conditions or autism or other specific conditions. See "PDD-NOS" under "Similar Conditions".
augmentative communication
? (I think: communication augmented by a device, see for example, PECS)
AUTCOM "Autism National Committee" (see "Organizations and Services")
Autism Behavior Checklist
?
Autistic savant
an autistic individual who displays incredible aptitude for one or two skills.
Autistic Spectrum Disorders
Term that encompasses autism and similiar disorders. More specifically, the following five disorders listed in DSM-IV: Autistic Disorder, Aspergers Disorder, PDD-NOS, Childhood Disintegrative Disorder, and Retts Disorder.
Aversives
Behavioral methods employing punishment rather than positive reinforcement. Often use physical pain. (see "Treatment" and "Controversies")
Bayley
?
BRI "Behavioral Research Institute" see JRC.
CAN "Cure Autism Now" (see "Initiatives")
Canon Communicator (see "Facilitated Communication" above under "Educational Methods")
CARS "Childhood Autism Rating Scale"
A test developed at TEACCH to diagnose autism. The child is rated in 15 areas on a scale up to 4 yielding a total up to 60, than ranges are considered to be non-autistic, autistic, and severely autistic. For reference, see entry on Schopler article in section "Bibliography" below.
CBCL "Achenbach Childhood Behavior Checklist"
diagnostic device.
CDC "Center for Disease Control"
US Government agency.
CF or c/f "casein free"
CFF "Community Care Facility"
CHAT "Checklist for Autism in Toddlers"
A checklist to by used by General Practitioners at 18 months to see if a child has Autism. Described in Baron-Cohen S; Allen J; Gillberg C. "Can autism be detected at 18 months? The needle, the haystack, and the CHAT." British Journal of Psychiatry, 1992 Dec, 161:839-43. (UI: 93130306)
chat
On the autism and other mailing lists, the Internet term "chat" is used to refer to Internet chatting, i.e. using software that allows you to hold online conversations by typing sentences that will be read by a group. There are a number of chat groups dedicated to autism: see the term "IRC" and see "Initiatives" section below.
communications notebook
a notebook sent with a student (typically a special education student or young student) to and from school by which parents and teachers maintain (possibly) daily communication.
Cranio-Sacral Therapy
(see "Cranial Sacral" Therapy under "Treatment")
Cluster
Used to label an unusually large number of occurrances of a disease or condition in one place. An "autism cluster" would be an unusually large number of cases of autism in (perhaps) a single locality. Clusters constitute evidence in the search for causes of diseases and conditions. In early 1999, an autism cluster was reported in the Brick Township of New Jersey.
DAN "Defeat Autism Now" (see "Initiatives")
Also "DAN!".
DAN Doctor
Also "DAN! Doctor". A physician who subscribes to the DAN protocol and attended a DAN Conference. There is a list of such doctors at http://www.autism.com/ari/danlist.html.
DAN Protocol
Also "DAN! Protocol". A protocol for the assessment of the underlying disorders that is causing the autism. It is the result of the DAN conferences.
DAS "Developmental Apraxia of Speech" (see "Treatment")
DD "Developmental Disabilities"
DH "Developmentally Handicapped"
Discrete Trial Methods
term used for some behavioral methods, e.g. the Lovaas Method (see "Behavioral Therapy" under "Treatment")
DSS "Department of Social Services"
DTT "Discrete Trial Training"
(Note: I've also seen it refered to as "Discrete Trial Therapy" and "Discrete Trial Teaching") I've seen the term applied to Lovaas's ABA-based method for treating autistic children, and I've seen it used as a term for the "drilling" aspect of ABA. The term is also often used in a less specific way, as a synonym for ABA. (see "Behavioral Therapy" under "Treatment")
DMAE "dimethyl aminoethanol" (see "Treatment")
DMG "dimethylglycine" (see "Treatment")
DSM-III, DSM-III-R, & DSM-IV "Diagnostic and Statistical Manual" (see "Books" in the "Bibliography" section below)
DTT "Discrete Trial Training" (see "Treatment")
DVD "Developmental Verbal Dyspraxia" (see "Similar Conditions")
Dyspraxia
Term for a neurological symptom: a problem with "praxis", i.e. planning, initiating, sequencing, and carrying out volitional movements. I think "dyspraxia" and "apraxia" mean the same thing, having been coined in different professional circles. See the variants of apraxia and dyspraxia under "Similar Conditions".
E-2 or E2
Bernard Rimland's check list from the Autism Research Institute (see "Organizations and Services"). It functions as an autism rating device, and is basically being used to gather data for study.
EAHCA "The Education for All Handicapped Children Act
See "Public Law 94-142".
echolalia
Repeating back something said to you. Delayed Echolalia is repeating it later. Both behaviors are found in many autistics. Functional echolalia is using a quoted phrase in a way that has shared meaning, for example, a child who sings the Barney jingle to ask for a Barney videotape, or says "Get your shoes and socks" to ask to go outside.
EEG "Electroencephalogram"
A test consisting of recording brainwaves as picked up by electrodes. It is used to identify seizures. It is also used to differentiate LKS from other disorders in with autistic symtoms.
ELAP "Early Learning Accomplishment Profile"
evaluation checklist for children used by some professionals (Cost $325 from Kaplan Catalog at 1-800-334-2014).
EFA "Essential Fatty Acid"
Evaluating Acquired Skills in Communication, Revised Edition
?
Face Blindness
See "Prosopagnosia" above under "Similar Conditions".
FAPE "Free and Appropriate Education"
FC or F/C "Facilitated Communication" (see "Educational Methods")
FCT "Facilitated Communication Training"
A variant of the term "Facilitated Communiction" (see "Educational Methods")
FEAT "Families for Early Autism Treatment"
See "Organization".
GARS "Gilliam Autism Rating Scale"
GF or g/f "gluten free"
HFA "High-functioning Autistic" or "High-functioning Autism"
Higashi
USA Higashi is a school for autistic children located in Boston. I believe it is modeled after a similar school in Japan. (see "Initiatives")
Hyperlexyia
Ability to read at an early age, but often without linking the words to what they words mean. (see "Similar Conditions")
Hypotonia
Low muscle tone.
ICD-10
International Classification of Diseases 10th Edition
ICF "Intermediate Care Facility"
IDEA "Individuals with Disabilities Act"
A US Law mandating the "Free and Public Education" a.k.a. FAPE of all persons with disabilities between the ages of 3 and 21.
IEP "Individualized Educational Plan"
IFSP "Individualized Family Service Plan"
IHP "Individualized Habilitation Program"
IgG
An antibody involved in intraveneous immunoglobulin (see "Treatment")
IGIV or IgIV "intravenous immunoglobulin" (see "Treatment")
IVIG
Same as IGIV.
IVIgG "intravenous gamma globulin" (see "Treatment")
IMHO "In My Humble Opinion"
this abbreviation is sometimes used on the Autism mailing list just as it is used on lots of lists and newsgroups.
Inclusion (see "Mainstreaming" under "Educational Methods")
IPP "Individual Program Plan"
IRC "Internet Relay Chat"
the term has nothing to do with autism per se, but refers to an Internet service to allow people to type messages to each other. The term is used on the AUTISM mailing list to refer to the IRC regular discussions on the subject of Autism (see section below "Initiatives").
JRC "Judge Rotenberg Center"
a facility in Providence RI run by Matthew Israel, a follower of B.F. Skinner. Extremely controversial due to its use of aversives (electro shock device, ammonia water sprays in face etc.) for self injurious behaviors and noncompliance. The state of Massachusetts has been unable to close it, despite the death of a resident during the administration of a punishment. It was profiled in a television documentary on Connie Chung's _Eye to Eye_ which included footage taken by a hidden camera of various punishments being administered to residents. The JRC was formerly called the Behavioral Research Institute (BRI).
Ketogenic diet
restricted diet used to prevent epileptic seizures.
LCSW "Licensed Clinical Social Worker"
LD "Learning Disabled"
LFA "Low-functioning Autistic" or "Low-functioning Autism"
LKS "Landau-Kleffner Syndrome" (see "Similar Conditions")
Lovaas (see "Behavioral Therapy" above under "Treatment")
LRE "Least Restrictive Environment"
LSH "Language, Speech and Hearing Specialist"
Mainstreaming
Placement of a disabled child with non-disabled peers in a regular classroom.
MEG
? (type of EEG?)
MR "Mentally Retarded" or "Mental Retardation"
MRI "Magnetic Resonance Imaging"
A diagnostic tool in the sense of an X-ray machine or Cat scanner, which like them, creates internal images of the selected parts of the body. Rather than sending X-rays through the body, it builds its image data by testing the magnetism of the body tissue.
MSDD "MultiSystem Developmental Disorder"
Stanley Greenspan's term for an autistic-like set of symptoms.
NAS "National Autistic Society" (see "Organizations and Services").
Neuroleptic
A class of drug that includes Haldol and Risperdal (see "Treatment").
Neurotypical
(see NT)
NICHCY "National Information Center for Children and Youth with Disabilities"
NIH "National Institutes of Health"
U.S. government agency.
NLP "Natural Language Paradigm" (see "Treatment").
Note: NLP is also the acronym for something else: "Neuro-Linguistic Programming", and partly for this reason, "Natural Language Paradigm" has been renamed "Pivotal Response Training".
NIMH "National Institutes for Mental Health"
NT "Neurologically Typical" or for short, "Neuro-typical" or "Neurotypical"
this term is used in discussions of autistic people to refer to people who are not autistic.
NOS "Not Otherwise Specified" (see "PDD-NOS")
OCD "Obsessive Compulsive Disorder" (see "Similar Conditions")
OCR "Office of Civil Rights"
Ocytocin
a neurotransmitter.
ODD "Oppositional Defiant Disorder"
OT "Occupational Therapy" or "Occupational Therapist"
Like Physical Therapy only deals with fine motor skills, e.g. picking up small objects like coins. Occupational therapists would be the people who provide Sensory Integration Therapy (see "Treatment")
PANDAS "Pediatric Autoimmune Disorders Associated with Strep"
PDD "Pervasive Development Disorder" (see "Similar Conditions")
PDD-NOS or PDD/NOS "Pervasive Development Disorder--Not Otherwise Specified" (see "Similar Conditions")
PECS "Picture Exchange Communication System" (See "Educational Methods")
PEP "psycho-educational profile" (see "PEP-R")
PEP-R "psycho-educational profile-revised"
a test designed (among other things?) to assess the presence of autism and point toward treatment strategies and some areas of need.
perserveration
obsessive-like continued immediate repetition of a behavior.
pica
ingestion of nonfood items.
PET
? (type of scan)
PPT
?
proprioceptive
?
PRT "Pivotal Response Training" (see "Treatment")
PT "Physical Therapy"
Public Law 94-142
Also known as The Education for All Handicapped Children Act of 1975 (EAHCA). USA Federal law providing funds to states that maintain certain standards in their education of handicapped children, i.e. providing a free and appropriate education in a least restrictive environment. I believe IDEA is the more recent version of this law.
Purkinje cells
A type of cell in the brain. There is a theory that a lack of Purkinje cells is related to autism. This idea came from reports of autopsies on autistic people.
QEEG
? (type of EEG?)
refrigerator mother
Slang jargon phrase used to describe mothers of autistic children who act coldly. The phrase was used in descriptions of the Freudian psychological theory of the cause of (infantile) autism. See section "History".
Residual state autism (actually, "infantile autism
residual state") A DSM-III (1980) category for individuals who once met the criteria for autism but no longer do so but may retain some residual traits. DSM-IV (1987) dropped the category.
Secretin
A hormone used to diagnose digestive problems (see "Treatment")
Sensorimotor
Pertaining to brain activity other than automatic functions (respiration, circulation, sleep) or cognition. Sensorimotor activity includes voluntary movement and senses like sight touch and hearing.
Seratonin
A neurotransmitter, i.e. brain chemical that plays a part in communication within the nervous system. It has been noted that the level of seratonin measured in autistic people is sometimes higher than that in typical people. Some of the drugs that have been tested for use with autistic people have been drugs already known to affect seratonin.
SI "Sensory Integration" (see "Educational Methods")
SI also sometimes stands for "Speech Impairment".
SIB "Self-Injurious Behavior"
SIT "Sensory Integration Therapy" (see "Educational Methods")
SLP or S-LP "Speech-Language Pathologist"
Son Rise
The name of a book by Barry Neil Kaufman about his autistic son (see section on accounts of autistic people under "Popular Attitudes") and the name of a program for treating/educating autistic children that Kaufman started (see "Initiatives").
SRRI "selective serotonin reuptake inhibitor" (see "Treatment")
SSI-DC "Supplimental Security Income-Disabled Child"
US program.
SSS "Scotopic Sensitivity Syndrome" (see "Similar Conditions")
stim
(e.g. stimming) short for "self-stimulation", a term for behaviors whose sole purpose appears to be to stimulate ones own senses. An example is rocking ones body. Many people with autism report that some 'self stims' may serve a regulatory function for them (ie. calming, adding concentration, shutting out an overwhelming sound). Other examples: hand-flapping, toe-walking, spinning, echolalia.
TEACCH "Treatment and Education of Autistic and Related Communication Handicapped Children" (see "Initiatives")
Theory of mind hypothesis
(see section "Theories and Causes" for a description)
titers
?
TOM "Theory of Mind"
TS "Tourette Syndrome" (see "Similar Conditions")
The initials "TS" have also been used for another condition, "Tuberous Sclerosis" (see "Similar Conditions").
The Welch Method (Welsh Method?; see "Holding Therapy" under "Educational Methods")
Upledger Cranio-Sacral Therapy
see "Cranial Sacral Therapy" under "Treatment". Upledger is the name of a person who sells training in the methodology to therapists.
Vineland Adaptive Behavior Scales
test sometimes used to evaluate students possibly requiring special education.

Autism FAQ - Popular Attitudes and Entertainment

Autism has caught the popular fancy since it was identified. Given how rarely it occurs, it receives a lot of attention because people find it fascinating. There are a number of popular books written by autistic's parents etc. Also, there have been a number of movies and TV shows that portray autism.

Given the changes in views on autism as well as the fact that a lot of non-experts like to state their opinions on it, as well as the fascination of the subject, a large percentage of the general public has faulty and/or dated views of autism, its causes and cures. Some recent accurate portrayals in popular entertainment such as Rain Man. have helped this situation.

There are accounts & stories of autistics being cured. One must that the reported instances of cures are rare at best and it is not always clear that the person cured was originally autistic. Also there are accounts of people who are not autistic in the sense of "early infantile autism" but are either described in the account or in some reviews as "autistic", perhaps in reference to the more general, dictionary-definition of autism meaning "absorption in fantasy". Such accounts may be true-to-life and/or inspiring, but are portraying something else.

Given the relative rarity of autism, it gets a lot of attention. Often a lot of attention is given to the education of autistics perhaps because they show signs of potential if it could only be unlocked, and perhaps because the syndrome is naturally fascinating to people. In fact, there have been parents who tried to get their children classified as autistic specifically because the services provided by their school district are better for autistic children than for mentally retarted children. Given the relative rarity of autistic children, on the order of one in 1000, the fact that one in three children basically doesn't succeed in high school (either fails out, drops out, graduates without really achieving high-school-level learning, sometimes going into a life of unemployment, crime, etc), though autistic children deserve attention, the case is sometimes put forward that society in general is ignoring the big and boring problem in favor of the small but interesting one.

Accounts

See also section below "Bibliography".

Articles
Annabel Stehli.
"Fighting for Georgie", Readers Digest (?). Article on same material as Annabel Stehli's book, The Sound of a Miracle.
Jacquelin Gorman.
"The Seeing Glass", Readers Digest (July 1997). Article on the same material as Jacquelin Gorman's book, The Seeing Glass.
Books

If you read this on the web, the ISBN numbers are links to Amazon.com which might offer the book for sale.

Christina Adams.
A Real Boy: A True Story of Autism, Early Intervention, and Recovery (Berkley Trade, 2005). ISBN: 0425202437 (paperback, 336 pages). [autism,account]
Anne Addison.
One Small Starfish (Future Horizons, 2002). ISBN: 1885477872 (hardcover, 373 pages). [autism,aspergers,account,parent,adhd]
Charles A. Amenta, III.
Russell is Extra Special: A Book About Autism for Children (New York: Magination Press, 1992). Ages 4-8. A sensitive portrayal of an autistic boy written by his father. A physician, Amenta skillfully weaves relevant factual information about autism into his narrative using clear language that children will easily follow. A wonderful book for children. ISBN: 0945354444 (paperback); ISBN: 0945354436 (hardcover). [autism,account,children]
Margaret Anderson.
Tales from the Table: Five Accounts of Lovaas Intervention With Children on the Autistic Spectrum (Jessica Kingsley Pub, forthcoming). ISBN: 1843103060 (paperback, 160 pages, due 5/15/2006). [autism,account,behavioral]
Linda Andron, editor.
Our Journey Through High Functioning Autism and Asperger Syndrome: A Roadmap (Jessica Kingsley Pub, 2001). Forewords by Tony Attwood and Liane Holliday Willey. ISBN: 1853029475 (paperback, 160 pages). [autism,aspergers,account]
Cindy N. Ariel, editor & Robert A. Naseef, editor.
Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, And Professionals Share Their Wisdom (Jessica Kingsley Pub, forthcoming). ISBN: 1843107864 (paperback, 256 pages, due 2/15/2006). [autism,account,family]
Karen Armstrong.
The Spiral Staircase: My Climb Out of Darkness (Knopf, 2004). Karen Armstrong has written other books about religion. This is a memoir of some of her own soul searching. Included are some experiences helping take care of an autistic young man. ISBN: 0375413189 (hardcover, 336 pages); ISBN: 0007122284 (hardcover, HarperCollins, 2004); ISBN: 0385721277 (paperback, 336 pages, Anchor, 2005); ISBN: 1594150672 (large print paperback, 530 pages, Walker Large Print, 2005); ISBN: 0060594381 (abridged audio CD, HarperAudio, 2004); ISBN: 0060587040 (abridged audio cassette, HarperAudio, 2004). [autism,account]
Maxine Aston.
Aspergers in Love: Couple Relationships and Family Affairs (Jessica Kingsley, 2003). ISBN: 1843101157 (paperback, 232 pages). [autism,aspergers,adult,account]
Connie M. Aull.
Letting Go of Jason: A Young Man with Asperger's Syndrome and Bipolar Disorder (iUniverse, 2005). ISBN: 0595342132 (paperback, 108 pages). [autism,aspergers,disability,account]
Autism National Committee.
New Stories for a New Day. [autism,account]
Virginia Mae Axline.
Dibs in Search of Self (Ballantine, 1964). The author is associated with Play Therapy and wrote a book on the subject. The story is about Dibs who the book does not label autistic, but though the book describes him to be emotionally disturbed, the symptoms described include those associated with autism. ISBN: 0345339258 (paperback, 220 pages, reissue edition 1990). [autism,account,play]
A. Jean Ayres, Robert R. Erwin & Zoe Mailloux.
Love, Jean: Inspiration for Families Living with Dysfunction of Sensory Integration (Crestport Press, 2004). Excerpts from Jean Ayres' letters with commentary. ISBN: 097250981X (paperback, 150 pages). [autism,si,treatment,account]
Caspian Banki.
What Autism Means to Me (Lifelight Books, 2003). [autism,account]
Judy Barron & Sean Barron.
There's a Boy in Here (Chapmans, 1993). Sean Barron and his mother, Judy Barron report on their experiences with autism. Sean has autism. His is one of very few autobiographical accounts. And it gives unusual, exceptionally clear insights into the disability and its many manifestations. There is much in this book that supports what has been seen through facilitated communication. ISBN: 1885477864 (paperback, 279 pages, Future Horizons, 2002); ISBN: 0671761110 (264 pages, New York: Simon & Schuster, 1992); ISBN: 0380722925 (paperback, Avon Books, 1992, reprint). [autism,account]
Dorothy Beavers.
Autism: Nightmare Without End (Ashley Books, 1981). ISBN: 0879491671 (hardcover). [autism,account]
Carolyn Betts.
Label Me Jeff (NSAC, 1979). [autism,account]
Carolyn Betts.
A Special Kind of Normal (Scribner, 1983). Revised version of Label Me Jeff. ISBN: 0684177781 . [autism,account]
Tom Billington.
Separating, Losing and Excluding Children: Narratives of Difference (Falmer Pr, 2000). ISBN: 0415230888 (hardcover, 192 pages); ISBN: 0415230896 (hardcover, 192 pages). [autism,account,se]
Jen Birch.
Congratulations! It's Asperger Syndrome (Jessica Kingsley, 2003). ISBN: 1843101122 (paperback, 270 pages). [autism,aspergers,account]
Lucy Blackman.
Lucy's Story: Autism and Other Adventures (Book In Hand, 1999). ISBN: 0646374087 ; ISBN: 1843100428 (paperback, 288 pages, Jessica Kingsley Pub, 2001). [autism,account]
Cherlene Brandl.
Facilitated Communication: Case Studies -- See Us Smart! (Ann Arbor, MI: Robbie Dean Press, 1999). http://www.bookmasters.com/RobbieDeanPress [autism,fc,account]
Ellen A. Brantlinger, Susan M. Klein & Samuel L. Guskin.
Fighting for Darla : challenges for family care and professional responsibility : the case study of a pregnant adolescent with autism (New York: Teachers College Press, 1994). 161 pages. [autism,account]
John Brine & Patricia Brine.
Confusion, Loneliness, Depression: Asperger's Syndrome - A Journey (2000). [autism,aspergers,account]
Gary Brown.
Little Bubba's Not Ready for National Yet: Case Histories of Kids with Autism and Other Neuropsychological Disorders (2001). http://store.yahoo.com/aba4autism-store/littlebubba.html [autism,account]
Rhonda Brunett.
From Autism to All-Star (Specialty Publishing Company, 2004). http://www.autism2allstar.com ISBN: 0975519913 (electronic, 123 pages). [autism,account]
Jean Bryant.
The Opening Door (1993). ISBN: 0646158635 (paperback, 229 pages). [autism,account]
Howard Buten.
Through the Glass Wall: Journeys Into the Closed-Off Worlds of the Autistic (Bantam, 2004). ISBN: 0553803468 (hardcover, 192 pages); ISBN: 0553382322 (paperback, 192 pages, Bantam, due March 2005). [autism,account]
Mary Callahan.
Fighting for Tony (New York: Simon & Schuster, 1987). Describes mother's experience dealing with her son's cerebral allergies & the son's dramatic improved after cow's milk was eliminated from his diet. ISBN: 0671632655 (172 pages); ISBN: 0671644564 . [autism,account,allergy]
Lindsley Cameron.
The Music of Light: The Extraordinary Story of Hikari and Kenzaburo Oe (Simon & Schuster, 1998). About the acclaimed autistic composer Hikari Oe, and his relationship with his father, the Nobel Prize-winning author Kenzaburo Oe. To explain the title, "Hikari" means "light". See also Kenzaburo Oe's A Healing Family. Two CDs of Hikari Oe's music are available (Denon 78952 and Denon 78053). ISBN: 0684824094 (hardcover, 256 pages); ISBN: 0783802862 (hardcover, large print, 273 pages). [autism,account,disability]
Richard W. Carlson.
Poems and Short Stories About My Brother Kevin Who Has Autism: Entertainment for Boys and Girls Ages 6 to 10 (Writers Club Press, 2002). ISBN: 0595228453 (paperback, 128 pages). [autism,children,account,poetry]
Mary W. Carpenter.
Rescued by a Cow and a Squeeze (PublishAmerica, 2003). A book for children about Temple Grandin. ISBN: 1591298806 (paperback, 47 pages). [autism,account,children]
Denise M Carrier.
Chase of a Lifetime: A Journey through Therapeutic and Academic Strategies for Children on the Autism Spectrum (iUniverse, 2003). ISBN: 0595290337 (paperback, 304 pages). [autism,account]
Kathleen A. Chara, Paul J. Chara, Jr., Karston J. Chara, J. M. Berns & Angela Litzinger.
Allergy Busters: A Story for Children with Autism or Related Spectrum Disorders Struggling with Allergies (Jessica Kingsley Publishers, 2004). Aimed at ages 9-12. ISBN: 1843107821 (paperback, 61 pages). [autism,children,account]
Eric Y. Chen.
Autism & Self Improvement: My Journey to accept Planet Earth (Singapore: Kentrich Trade Press, 2007). http://iautistic.com ISBN: 9810589379 (paperback, 153 pages, ISBN-13:978-9810589370). [autism,account]
William Christopher & Barbara Christopher.
Mixed Blessings (Nashville: Abingdon Press, 1989). 224 pages. TV's Father Mulcahy of M*A*S*H and his real-life family share the story of raising son, Ned, who has autism. The Christophers used the intensive and controversial Doman-Delacato techniques to educate and treat Ned at home. The book has a moving section on Ned's troubled adolescence, when he developed epilepsy and violent rages, and the family's search for a group residence that would fit Ned's needs. ISBN: 0380709996 ;