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Autism is a complex pervasive developmental disorder that involves the functioning of the brain. It is a neurological disorder and not simply a psychiatric disorder, even though typical characteristics include problems with social relationships
and emotional communication, as well as stereotyped patterns of interests, activities and behaviors. It also involves problems
with sensory integration. Typically, it appears during the first three years of life. It is estimated that it occurs in
approximately 2 to 6 in 1,000 individuals, and is 4 times more prevalent in males than females (source: The Autism Society of
America [1] ). It is most prevalent in Caucasian males.
As of 2004, autism is treatable, but not curable (although there is an
organization called "Cure Autism Now"). Early diagnosis and intervention are vital to the future development of the child. It is
widely considered that cure is impossible, because autism involves aspects of brain structure that are determined very early in
development. However, there are persistent claims that some individuals after diagnosis have been helped to recover.(See
references to Karyn Seroussi, and Cheri Florance )
History
Hans Asperger
Not until the middle of the twentieth century was there a name for a disorder that now appears to affect an estimated one of
every five hundred children, a disorder that causes disruption in families and unfulfilled lives for many children.
In 1943 Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 children and introduced the label early infantile
autism into the English language. At the same time a German scientist, Dr. Hans Asperger, described a milder (or at least different) form of autism that became known as Asperger
syndrome.
Thus these two disorders were described and are today listed in the Diagnostic and Statistical Manual of Mental Disorders
DSM-IV-TR (fourth edition, text revision)1 as two of the five pervasive developmental disorders (PDD), more often referred to
today as autism spectrum disorders (ASD). All these disorders are characterized by varying degrees of difference in communication
skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior.
Leo Kanner
Symptoms
Possible Indicators of Autism Spectrum Disorders:
- Does not babble, point, or make meaningful gestures by 1 year of age
- Does not speak one word by 16 months
- Does not combine two words by 2 years
- Does not respond to name
- Loses language or social skills
Some Other Indicators:
- Poor eye contact
- Doesn't seem to know how to play with toys
- Excessively lines up toys or other objects
- Is attached to one particular toy or object
- Doesn't smile
- At times seems to be hearing impaired
Social Symptoms
From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp
a finger, and even smile.
In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give-and-take of everyday
human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent
to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later,
they seldom seek comfort or respond to parents' displays of anger or affection in a typical way. Research has suggested that
although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to "read."
To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching,
and playing with their child may feel crushed by this lack of the expected and typical attachment behavior.
Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues –
whether a smile, a wink, or a grimace – may have little meaning. To a child who misses these cues, "Come here" always means
the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips.
Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem,
people with ASD have difficulty seeing things from another person's perspective. Neurotypical (popularly described as "normal")
5-year-olds understand that other people have different information, feelings, and goals than they have. A person with ASD may
lack such understanding. This inability leaves them unable to predict or understand other people's actions.
Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the
form of "immature" behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The
individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more
difficult. They have a tendency to "lose control," particularly when they're in a strange or overwhelming environment, or when
angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their
heads, pull their hair, or bite their arms.
Communication Difficulties
By age 3, neurotypical children have passed predictable milestones on the path to learning language; one of the earliest is
babbling. By the first birthday, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when
offered something distasteful, makes it clear that the answer is "no."
Speech development in Autism takes a different path developmentally than in neurotypical children. Some autistics remain mute
throughout their lives, while being fully literate and able to communicate in other ways -- images, sign language, and typing are
far more natural to them. Some infants who later show signs of ASD coo and babble during the first few months of life, but they
soon stop. Others may be delayed, developing language as late as the teen years. Still, inability to speak no more means that
autistics are unintelligent or unaware than it does in a neurotypical with his or her mouth taped shut. Once given appropriate
accommodations, many will happily "talk" for hours, and can often be found in spectrum chat rooms, discussion boards, websites,
or even using communication devices at the annual Autreat.
Those who do speak often use language in unusual ways, retaining features of earlier stages of language development for long
periods or throughout their lives. Some speak only single words, while others repeat the same phrase over and over; some repeat
what they hear, a condition called echolalia. Sing-song repetitions in particular are a calming, joyous activity that many
autistic adults engage in. Many autistics have a strong tonal sense, and can often understand spoken language better if it is
sung to them.
Some children only mildly affected may exhibit slight delays in language, or even seem to have precocious language and
unusually large vocabularies, but have great difficulty in sustaining a conversation neurotypical-style. The "give and take" of
NT conversation is hard for them, although they often carry on a monologue on a favorite subject, giving no one else an
opportunity to comment. When given the chance to interact with other autistics, they comfortably do so in "parallel monologue" --
taking turns expressing views and information. Just as neurotypicals are not designed to understand autistic body languages,
vocal tones, or phraseology, autistics similarly have trouble with such things in NTs. In particular, autistic language abilities
tend to be highly literal; neurotypicals often inappropriately attribute hidden "meaning" to what autistics say or expect the
autistic to sense such unstated meaning in their own words.
The body language of autistics is uniquely designed for other autistics, and therefore can be difficult for NTs to understand.
Facial expressions, movements, and gestures are appropriate for and easily understood by other autistics, but do not match those
used by neurotypicals. Also, their tone of voice has a much more subtle inflection in reflecting their feelings, and the
neurotypical auditory system often cannot sense the fluctuations. What seems to NTs like a high-pitched, sing-song, or flat,
robot-like voice is common. Some children with relatively good language skills speak like little adults, rather than falling into
the immature "kid-speak" that is common in their neurotypical peers.
With neurotypicals often refusing to learn the autistic body language, and their natural language not tending towards speech,
people with ASD often are forced to struggle to let others know what they need. As a result, as anybody would do in such a
situation, they may scream in frustration or resort to grabbing what they want. While waiting for neurotypicals to learn to
communicate with them, autistics do whatever they can to get through to them. As people with autism grow up, the accumulation of
mistreatment, constant rejection from NTs assuming that differences are something to "cure", and constantly being misunderstood
by NTs refusing to help bridge the neurological gap logically causes them to become anxious or depressed.
Repetitive Behaviors
Although children with ASD usually appear physically normal and have good muscle control, unusual repetitive motions may set
them off from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older
individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position.
As children, they might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play.
If someone accidentally moves one of the toys, the child may be tremendously upset. ASD children often need, and demand, absolute
consistency in their environment. A slight change in any routine—in mealtimes, dressing, taking a bath, going to school at
a certain time and by the same route—can be extremely disturbing. Perhaps order and sameness lend some stability in a world
of confusion.
Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. For example, the child might be obsessed
with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is great interest in numbers, symbols, or
science topics.
Severity of symptoms
Autism presents in a wide degree, from those who are nearly dysfunctional and apparently mentally retarded to those whose symptoms are mild or remedied enough to appear unexceptional (normal)
to the general public - who often refers to the most functional autistics as 'nerds'.
"Low" and "High-functioning"
In terms of both classification and therapy, autistic individuals are often
divided into those with an IQ<80 referred to as having
"low-functioning autism" (LFA), while those with IQ>80 are referred to as having "high functioning autism" (HFA). Low and high
functioning are more generally applied to how well an individual can accomplish activities of daily living, rather than to
IQ.
This discrepancy can lead to confusion among service providers who equate IQ with functioning and may refuse to serve high-IQ
autistic people who are severely compromised in their ability to perform daily living tasks, or may fail to recognize the
intellectual potential of many autistic people who are considered LFA. For example, some professionals refuse to recognize
autistics who can speak or write as being autistic at all, because they still think of autism as a communication disorder.
Asperger's and Kanner's syndrome
Of the most common presentations of autism, Kanner's
syndrome is often described as classical autism, implying low-functioning, while Asperger's syndrome is described as a high-functioning form of autism, but this is not necessarily the
case.
In the current Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) the
most significant difference between Autistic Disorder (Kanner's)
and Asperger's Disorder is that a diagnosis of the former includes the observation of "[d]elays or abnormal functioning in at
least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social
communication, or (3) symbolic or imaginative play[,]" [2] while in these areas a diagnosis of
Asperger's observes "no clinically significant delay." [3]
The DSM makes no mention of level of intellectual functioning, but the fact that Asperger's autistics as a group tend to
perform better than those with Autistic Disorder has fed the popular conception that Asperger's Syndrome is synonymous
with HFA, or that it is a lesser disorder than autism. There is also a popular but untrue conception that autistic
individuals with a high level of intellectual functioning have Asperger's Syndrome, or that both are merely geeks with a
medical label attached.
Autism has evolved in the public understanding, but the popular identification of autism with relatively severe cases as
accurately presented in Rain Man is an encouragement for relatives of
family members diagnosed in the autistic spectrum to speak of their loved ones as having Asperger's syndrome rather than
autism.
Autism as a spectrum disorder
Another view of these disorders is that they are on a continuum, so can be known as autistic spectrum disorders. Another related continuum is Sensory Integration Dysfunction which is
about how well we integrate the information we receive from our senses. Autism,
Asperger's Syndrome, and Sensory Integration Dysfunction are all closely related and overlap.
Some high-achieving individuals are thought to have had some form of autism. However, this may be favoured diagnosis due to
the high current visibility of autism in the popular press. In the 1980s, such individuals
were often characterised as dyslexic or dysmetric; other popular diagnoses for famous
achievers have included bipolar disorder (manic depressive),
schizophrenia or in one lamentable case, Tourette syndrome (Mozart was
supposed to have it because of his reported fondness for scatological humor). However, it is true that autistic people may have
other learning disabilities such as dyslexia.
There are two main types of autism, regressive autism and early
infantile autism. Early infantile autism is present at birth while regressive autism begins at approximately 18 months. There
are also cases of children developing abnormally from birth but regressing around the age of 18 months, causing some degree of
controversy as to when the neurological difference involved in autism truly began.
Rare Autism spectrum disorders
Rett Syndrome
Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal
development, sometime between 6 and 18 months, autism-like symptoms begin to appear. The little girl's mental and social
development regresses; she no longer responds to her parents and pulls away from any social contact. If she has been talking, she
stops; she cannot control her feet; she wrings her hands. Some of the problems associated with Rett syndrome can be treated.
Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.
Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the
sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It
may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these children much sooner, and
improving the quality of life these children experience.*
Childhood Disintegrative Disorder
Very few children who have an autism spectrum disorder (ASD) diagnosis meet the criteria for childhood disintegrative disorder
(CDD). An estimate based on four surveys of ASD found fewer than two children per 100,000 with ASD could be classified as having
CDD. This suggests that CDD is a very rare form of ASD. It has a strong male preponderance.** Symptoms may appear by age 2, but
the average age of onset is between 3 and 4 years. Until this time, the child has age-appropriate skills in communication and
social relationships. The long period of normal development before regression helps differentiate CDD from Rett syndrome.
*Rett syndrome. NIH Publication No. 01-4960. Rockville, MD: National Institute of Child Health and Human Development,
2001. Available at [4]
**Frombonne E. Prevalence of childhood disintegrative disorder. Autism, 2002; 6(2): 149-157.
***Volkmar RM and Rutter M. Childhood disintegrative disorder: Results of the DSM-IV autism field trial. Journal of the
American Academy of Child and Adolescent Psychiatry, 1995; 34: 1092-1095.
Increase in diagnoses of autism
There has been an explosion worldwide in reported cases of autism over the last ten years. There has been considerable
speculation as to why this might be, with no conclusive proof emerging around any theory. However, studies have ruled out the
speculation that the rise is attributable to an improvement in diagnostic methods.
In the last decade, the population of the United States has increased by 13%. There has been an increase in non-autism-related
disabilities of 16%. The increase in autism is 173%.
In 2001, Wired Magazine
published an interesting speculative article The Geek Syndrome exploring the surge in apparent autism
in Silicon Valley. This is only one example of the media's application
of mental disease labels to what is actually variant normal behavior. Shyness, lack of athletic ability or social skills, and
intellectual interests, even when they seem unusual to others, are not in themselves signs of autism or Asperger's syndrome.
Remediation of autistic behaviors
Remediation of debilitating aspects of autism was long hindered not only by widespread disagreement over its nature and
causes, but by lack of a recognized and effective course of therapy.
Dr. Bruno Bettelheim believed that autism was linked to trauma
in early childhood, and his work was highly influential for decades. Parents, and especially mothers, of autistics were blamed
for having caused their child's condition through the withholding of affection. Leo
Kanner, who first described autism (Autistic disturbances of affective contact, 1943) originated the concept of
"refrigerator mothers" in regard to autism, although he eventually renounced the concept and apologized publicly. Bettelheim took
the theory further. These theories did nothing to address the fact that having more than one autistic child in a family is
exceptional, not the rule. Treatments based on these theories failed to help autistic children.
A major breakthrough in the remediation of autistic behaviors came through work spearheaded by Ole Ivar Lovaas, who believed that
success could be obtained by behavioral approaches.
- Lovaas' approaches—often referred to as Discrete Trial, Intensive Behavior Intervention, and Applied Behavior
Analysis—are some of the best known and most widely used in the field and focus on the development of attention, imitation,
receptive or expressive language, and pre-academic and self-help skills. Using a one-to-one therapist-child ratio and the
“antecedent-behavior-consequence” (ABC) model, interventions based on this work involve trials or tasks. Each
consists of (a) an antecedent, which is a directive or request for the child to perform an action; (b) a behavior, or response
from the child, which may be categorized as successful performance, noncompliance, or no response; and (c) a consequence, defined
as the reaction from the therapist, which ranges from strong positive reinforcement to a strong negative response,
“No!”(Autism Society of America, 2001).[5]
Lovaas' Applied Behavioral Analysis (ABA) methods were the first scientifically validated therapy for autism. Early
intervention, generally before school-age, is critical for children who would benefit from these programs.
NOTE: ABA gurus don't like people looking at the proof! Both because of Lovaas' study-within-the-study that proves strong
punishment is absolutely necessary for ABA to work, and Lovaas' previous work in prevention of homosexuality by using the
strongest aversives available - electroshock! (homosexuality was illegal in California at the time, and also considered a gender
disorder). While the icky historical origin might be ignored as soon as we get anti-electroshock laws(who are BY NO MEANS
universal), the fact that ABA was a failure without strong aversives can't be ignored by people who wish to use the
scientifically validated ABA. If you wish to try ABA without punishment, you can't keep the scientifically proven claim... in any
case there are valid cases where ABA punishment is both useful and ethical, such as in preventing auto-mutilation.
If any successful ABA professional feels attacked, he should remember that ABA has been anecdotally been known to work without
punishment when used by certain therapists - and keep working when the therapist switches to a completely different method! In
this case it's not ABA that is causing progress. Lovaas' study was studying ABA, not studying individual therapists.
ABA is not appropriate for all autistic or developmentally delayed children. ABA has come into widespread use only in the last
decade and the demand is outstripping the supply of committed and experienced service providers. As a result, parents of children
need to be extra vigilant in choosing appropriate treatments for their children and especially in choosing providers,
who may be inexperienced, use questionable methods or even deceive parents that they are competent to run an ABA or any other
program. Such problems have led to horror stories from some parents. [6] [7] . See also Autism talk.
Aspects of autism
Some things to mention here:
- Simon Baron-Cohen's team at the Autism Research Centre in Cambridge, UK, measured testosterone levels in the amniotic fluid
of mothers while pregnant. This is presumed to reflect levels in the babies themselves. The team found that the babies with
higher fetal testosterone levels had a smaller vocabulary and made eye contact less often when they were a year old.
- His group has looked at the original 58 children again, at age four. The researchers found that the children with higher
testosterone in the womb are less developed socially, and the interests of boys are more restricted than girls. The results will
be published in the Journal of Child Psychology and Psychiatry (2004).
- Baron-Cohen theorises that high fetal testosterone levels push brain development towards an improved ability to see patterns
and analyse systems. Males supposedly tend to be better at these tasks than females. But the high levels are thought to inhibit
the development of communication and empathy, which are allegedly typical female skills.(New Scientist, 24 May 2003). There is
still no demonstrable evidence that testosterone levels affect brain development at all, let alone autism. Gender or
bio-determinism is a fashionable explanation for many human behaviours, but has been challenged by
other professionals .
- there was some research by Andrew Wakefield in the UK, published in The
Lancet in February 1998, suggesting a possible link between autism and the MMR vaccine. This was very controversial. Subsequent studies failed to confirm the link, and some in fact
showed a lack of such a link. The original research has come under criticism, largely due to a conflict of interest on
Wakefield's part. In February 2004 The Lancet described the research as "entirely flawed" and said that it should never have been
published. Controversy continues, with Wakefield defending his integrity.
- research in the US suggesting a similar link between autism and DPT vaccine.
- the analysis of autism as "mind blindness"—the inability to create models of other people's thoughts. the typical
example of this is "where does X look for the object they stored, but which was moved by Y"—see theory of mind
- Dr. Bernard Rimland's
influential research and his book Infantile Autism (1967) which argued that autism was not caused by childhood trauma or
abuse, but by damage to certain areas of the brain, particularly the reticular formation which
associates present sensory input with memories of past experiences. Dr. Rimland is a foremost advocate of the theory that autism
may be precipitated by mercury/heavy metal toxicity.[8] He also is prominent in
increasingly common claims of successful treatment of autism in children with the gluten-free, casein-free diet & mercury chelation therapy.
Both Oliver Sacks and Torey Hayden have written about their autistic patients or pupils, respectively. Temple Grandin has also written about her own life as a person with autism.
Donna Williams in her books, including (Autism: an inside-out
approach, ISBN 1-85302-387-6)
give an interesting perspective on the experience of the person with autism and the degree to which recovery is possible. Many
other people who have autism have written books on the condition (and on other topics).
- The Options program. In the early 1970s,
advertising executive Barry Kaufman published a sensational book, Son Rise , about his
son Raun Kahlil's "triumph over autism". Raun apparently had regressive autism subsequent to a series of life-threatening ear
infections. (He was never actually diagnosed, and may only have been speech-delayed with a few autistic features.) In true
California style, Kaufman and his family chose to "feel happy about" Raun's condition. They tried to communicate with Raun not by
overt attempts to force neurotypical behavior, but by imitating his endless rocking, plate spinning and other rituals, meanwhile
gently introducing eye contact, speech, song, etc. for him to imitate if he would. Supposedly, Raun snapped out of it and began
behaving as a completely neurotypical child. The book was embraced by thousands of parents in desperate hope. Raun's story seemed
to prove the myth of the "real child" trapped in a shell of autism. Kaufman's ideas led to the creation in 1983 of the Options institute, in which children with all sorts of autistic-spectrum conditions receive the same
sort of interactive training in hopes that they will "choose" not to be autistic! The program emphasizes loving and accepting the
child just as he is, but the attitude exemplified by the language used -- "rescuing" the child from autism, "rebirthing"
him from a "living death", and so on -- would seem to belie this. A positive attitude is mandatory -- the institute's motto is
"Happiness is a Choice" -- and a child's failure to respond is blamed on parents' "negative attitude" rather than any defect in
the program itself. In more recent years, the program has expanded to include children diagnosed with ADHD and group therapies for adults. Some ex-members describe Options as cultlike , while some autistic
individuals feel that Options is not geared for all autistic persons and that its goals are unrealistic: http://rsaffran.tripod.com/sonrise.html. In any case, "choosing" not to be autistic
certainly won't magically make appear the two missing brain structures shown to be missing or altered here [9] or make autistics think about people in the
same area of the brain that normal people use. Those features will continue to make the autistic internally different and
inherently inconfortable with some aspects of normal behavior, regardless of how he is fully trained/self-trained at
pretending to be normal [10]
Problems that may accompany autism spectrum disorders
Sensory problems
When children's perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory
information is faulty, the child's experiences of the world can be confusing. Many children who have ASD are highly attuned or
even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their
skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping
the shoreline—will cause these children to cover their ears and scream.
In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain.
An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch
may make the child scream with alarm.
Autistic babies are often observed to stiffen when held. This is due to the sensory overload discussed above, and the
stiffening is a coping mechanism which also occurs in adults. Because sensory overload occurs from birth, the coping behaviour is
notable as one of the earliest observable symptoms of autism. However, it is not universal among autistics. There is great
variation in the susceptibility to sensory overload.
Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others
may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn
low scores on the language subtests.
Mental retardation isn't a mandatory feature of autism: a few autistics have a well above average IQ(some are Mensa members).
IQ test results are much more uneven in the sub-categories than normal, frequently showing a peak in visuo-spatial tasks or rote
memory. Because of this an autistic may have much more skill in doing certain things than his IQ seems to indicate, and when
taken to the extreme it is called autistic
savant
One in four children with ASD develops seizures, often starting either in early childhood or adolescence. Seizures, caused by
abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a "blackout"), a body convulsion,
unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG can help confirm the seizure's presence.
In most cases, seizures can be controlled by a number of medicines called "anticonvulsants." The dosage of the medication is
adjusted carefully so that the least possible amount of medication will be used to be effective.
This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome
has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five
percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are
considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance
that boys born to the same parents will have the syndrome.5 Other members of the family who may be contemplating having a child
may also wish to be checked for the syndrome.
Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs.
It has a consistently strong association with ASD. One to four percent of people with ASD also have tuberous sclerosis.6
Controversies in Autism
Controversy exists as to whether autism, particularly (but by no means limited to) Asperger autism, is a disorder at all, or
simply a variation in neurological hardwiring. Many autistics do not lack language skills (some mute autistics such as Jasmine
O'Neill write very well) and desire to speak for themselves about their experience. They do not desire a cure, but rather to be
given opportunities to use their unique skills and perceptions in useful ways. Websites such as autistics.org present their view.
Some people understand this attitude as an outgrowth of their perception that the word "autism" is fast becoming misused to
define shy, intellectually-oriented children who are not extroverted nor interested in sports, or who are slightly
developmentally delayed (better autistic than retarded?). However, the original autistic people to popularize the view that
autistic people need not be cured, of whom one of the most famous is Jim Sinclair, were diagnosed in a time when autism was a
decidedly unpopular diagnosis. Thus, it should also not lightly be assumed that autistic people presenting this point of view
represent a misdiagnosed group. Many have been diagnosed correctly, are not simply shy or introverted "geeks" with a few social
quirks. They experience severe problems in day to day functioning, but find that autism is still too much of an intrinsic part of
themselves to want to have it indiscriminately eradicated in the name of normalcy. Parents who are desperate for a "normal" child
may agree to all sorts of treatments, including electroshock therapy, neuroleptic and antidepressant medication, and ABA
behavioristic training -- which at its most extreme appears barbaric, to say the least. Children Injured By
Restraint and Aversives presents open letters
from parents on this subject.
There are many purported treatments, or even alleged cures, for autism that, if anything, achieve only conformity on the part
of the subject. Many "treatments" are aimed at making the autistic person act in a superficially normal manner, and end up
conditioning the autistic person to simulate desired behaviours (such as eye contact) without giving them any social
understanding or making them any more comfortable with the behaviour. Others, such as the particularly cruel "holding therapy",
achieve nothing positive other than to make the non-autistic parent feel better. Some autistic children have died under such
treatment.
The cause and historics of one such treatment, ABA, has been analysed in Michele Dawson's "The Misbehavior of Behaviourists"
http://www.sentex.net/~nexus23/naa_aba.html A key feature of this site is the
academic-level proof that ABA was constructed from the earlier model of "correcting" homosexuality with electroshocks as a means
of making non-homosexuals comfortable. This proof comes from Lovaas' own works no less, including his orthodox-christian values
as justification). Dawson goes on to show that strong aversives are the inherent effective ingredient of ABA; that the
opportunity to use strong aversives is directly related to the job satisfaction of the professional who uses it on the autistic
(not necessarily out of sadism; therapists like successes better than failures); that ABA doesn't only address the dysfunctional
side of autism but also enforces social norms so that non-autistics feel better around autistics in the stated goal to
remove/hide autism entirely. This position has been softened by ABA in discourse, but not in always in their actions).
Autistics who are capable of written or spoken communication have often argued that the strong aversives used to punish
breaking of a social rule are unethical and barbaric, especially in cases of "soft" rules that don't relate to things illegal or
are widely tolerated in non-autistics; for example, non-autistics are frequently given more lenience concerning the same rule).
Arbitrary culture-centric rules are also frowned upon; some autistics have left a job rather than wear a tie, because of either
they're not coordinated enough to put one on or because they find the physical constriction intolerable. The tie situation has
been seen as purely hypocritical in programmer-type jobs, since very few people (let alone costumers) will actually be there to
notice if the autistic is wearing a tie or not. Some employees with Asperger syndrome have been known to specify in their work
contract the right not to make eye contact with the employer [What's the source for this info?] because they fear discrimination
since eye contact is supposedly a sign of honesty in mainstream society. [It is an interesting fact that many Plains Indian
cultures regard eye contact as impolite, especially between social inequals -- adult/child, teacher/student, employer/employee,
etc.]
Autustics who communicate have also expressed speculation that if ABA is so effective, perhaps it should be used to treat
school bullies. Bullies have long been perceived as having a de-facto 'right' and 'duty' to torment the autistic (the old idea
that peer pressure can force children to behave in a neurotypical manner). Bullies don't like to be perceived as weak, and might
be bullied themselves if they stopped their aggressive actions. This concept is similar to ABA, training bullies to be more
bullying with strong aversives). The usual advice offered by adults, often intended to help the victim become harder to hurt
(e.g., why didn't you strike first? Form your own gang! Fight back!) are as completely unadapted as the blaming of the autistic
for the incidents (Why do you let them do these things?) Authorities tend to categorize whoever has the highest number
of incidents as being the source of the problem. Since school directors have so little time and so little reliable facts, they
tend to work "statistically" and discard the occasional fact as not typical of the whole. The poor social performance in front of
the director doesn't help!
The problem most poorly understood by parents is incidents that ARE knowingly the fault of the autistic; the autistic will NOT
avoid frequent punishment if he stop causing incidents willingly because of the flood of blame he gets from incidents where he's
innocent. The autistic might react by developing a strong sense of ethics and honesty as a compensation for feelings of
inferiority (very common - dysfunctional where white lies are the social rule), or if he doewn't he will completely lack
'training' in not willingly causing incidents. Since 'Pavlovian' or 'ABA-like' training are part of the few that are effective in
autistics, in this case punishment-based training should be used and is NOT (since true training requires the stopping of the
punishment when acting correctly).
As for whether high school punishment should be changed when dealing with autistics, this question remains controversial among
autistics themselves except when punishment is judged too strong for anyone(such as physical punishment, illegal in some
countries and encouraged in others). Punishment type however should be changed, since situations that would be punishment for a
neurotypical might be delightful for an autistic, and vice versa. and a nice picnic as a reward might act as a punishment if it
goes against the autistic's need for predictability of routine, if wind/double meaning overload/sunlight/eye contact inconfort
forces the autistic to 'space out', or if the picnic is associated with a reward for say some great school success but there
isn't a similar picnic for the next identical great school success (easily avoided by making rewards and punishment very
predictable well in advance). Teachers should ask parents what works and what doesn't - and many teachers totally fail to do
that, claiming it would be controversial for the school to do so!
ABA also lacks the "why". The "bad choice equals punishment" equation does not address the why this is a social rule, how
relatively important it is to other social rules it might interfer with, and how it works in the mind of others. "Scope" too, is
missing from ABA; autistics often fail to generalize that behaviors learned in one situation to other situation like other
children do, or fail to avoid overgeneralization. ABA assumes 'why' and 'scope' to be completely beyond the comprehension of the
autistic. Sadly, this is true of deeply affected Kanner autistics who will never learn from a candy/electroshock if not given
mere seconds after it is earned (very much like dog training). It is however not true for all autistics, particularly Asperger
autistics or those who are simply a bit "developmentally delayed". ABA fails to take advantage of a partial 'theory of mind', of
'willingness to learn by example', of 'tendency to follow well-detailled predictable rules because predictability is felt as an
inherent reward', of 'building upon the tendency to evolve a strong sense of ethics independant of punishment/reward', of 'state
the social rules as they exist, not the white lie version which weakens theory of mind', or even 'This social rule is not so
important enough, because following it would cause you severy sensory pain. But to look as normal as you can try this instead'.
Using those new tactics relegates ABA to a small corner of the therapy, and whoever has success this way is not using the
scientifically proven ABA method, as mendated by some Canada courts who made it mandatory for the state to give ABA. Not being
strictly inside the 'scientifically proven' is uncomfortable to some authorities who aren't sufficiently in touch with
the facts; autistics have never been allowed true self-representation, and therapists tend to follow orders.
It is not surprising that autistic adults feel outraged by 'orthodox' ABA and that their cooperation can only be obtained by
using punishment strong enough to make homosexuals give up all their subcultural traits and reject homosexuality! (as used
historically inflicted on homosexual non-autistics by Lovaas). ABA itself makes no distinction of what should be enforced with
strong aversives, what shouldn't be enforced with strong aversives, and what is a grey area. Therapists have historically drifted
toward more and more punitions because they wanted results, or because it improves their job satisfaction(for reasons unspecified
in the study on job satisfaction -- sadism may not be the motive, but the complete lack of industry watchdogs makes ABA very easy
to abuse.
One example of ABA's perfectly valid, peer-reviewed science is listed in the PUBMED medical index; this is a study that asks
which electroshock pattern is the most painful. This is a year 2002 article, and despite ABA's denial of punishment as necessary
the research oriented toward finding maximum punishment possible is vital in areas like prevention of automutilation in Kanner
autistics. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12365852
There is nothing wrong with this research; it's just that ABA without punishment as advertized by people who are new to it (or
simply lying) is like trying to drive your car without having the key. It seems a very minor and 'probably optional' part of the
car, weight-wise, would say someone that doesn't understand cars, but it is necessary. And if you start a car without the key,
you aren't following ABA no more - some ABA therapists who don't use punishment will succeed because of things that don't belong
to ABA at all. Do not mistake the method for the individual's qualities.in Lovaas' own study, ABA was scientifically been
proven to fail when aversives were not applied.
People who think autistics should behave like neurotypicals and that punishment is a worthwhile method should reflect on this.
The very 'humanity' they value so much would take as much punishment to take away, turning them into people socially
undistinguishable from true autistics, than it takes to turn an autistic into someone socially undistinguishable from a
neurotypical! The devastation felt by the hypothetical 'autistized' person would be equal to the devastation of autistics who
have their true personalities shredded away day by day in an aversive ABA program. Given the importance of what is lost in a
"sucessful" ABA process, it's no wonder ABA is only effective in direct proportion with the strength of the aversives.
As for how far the punishment an unethical behavior of an autism institution can go (ABA or otherwise), read The Standford Prison Experiment . Consider that these autism "cures" have been going on for decades
without watchdogs. Many autistics are much easier to manipulate than neurotypical prisoners. Even the most capable autistics
aren't allowed to be present in the decision-making process even as silent witness. Some individuals use punishment without
therapeutic goals for their personal enjoyment, and the Standford study showed that no one was willing to stop them (one third of
the "guards" in the experiment). Consider what Standford reveals about what human nature becomes when left unchecked.
Many autism organisations could be renamed as "society for the well being of autistic parents at the expense of the autistic,
using methods typical of dictatorships up to the limit allowed by law, under pretense of helping and representing the autistics".
The worst and the best examples are found in how an autism society deals with fully independent, communicating autistics, making
them a valuable ressource, yes-man 'zombies', or blacklisting them from reunions altogether. [The author of this part of the
article is such a blacklisted individual as is his closest friend. The token autistic spokesperson is forced to report on our
activities to the heads of the autism society if he wants to keep his technician job outside the autism society because
his boss is part of his autism society!] This situation is not unique; it exists in at least three autism societies.
As for those traditional social skills courses, some high-functioning/aspergers are far more competent in understanding social
interactions than autism academics are (as explicitely stated by many psychiatrists). That doesn't translate into better social
skills, much like someone made blind can understand road signs perfectly but never looking at them when walking to the grocery
store a few blocks away. That behavior seems as strange as autism for the same reason if you don't know where the disability is.
Because of this incompetent social skill courses are little more than glorified baby sitting in many cases, and used as such by
many parents when it's less expensive than regular babysitting... very practical feedback by autistics who are of better academic
competence in autism than a regular academic is being ignored and this is a problem - good social skill courses are rare, so if
you find one treasure it(and wikipedia it)!
One key autism institution controversy: "if prisonners, the blind, the insane, and the mentally retarded can have a few
watchdogs - especially watchdogs choosen among themselves - to help prevent abuses, why can't autistics have them? And why all
the snitching?"
Adults with an Autism Spectrum Disorder
Some adults with ASD, especially those with high-functioning autism or with Asperger syndrome, are able to work successfully
in mainstream jobs. Nevertheless, communication and social problems often cause difficulties in many areas of life.
Many others with ASD are capable of employment in sheltered workshops under the supervision of managers trained in working
with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons
with ASD continue to learn and to develop throughout their lives.
In the United States, the public schools' responsibility for providing services ends when the person with ASD reaches the age
of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of
their adult child, as well as the programs and facilities that can provide support services to achieve these goals.
See also
External links
References
Donna Williams Autism:an inside-out approach, ISBN 1853023876 (gives an interesting perspective on her own experiences as a person with autism)
Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, by Karyn
Seroussi. Published by Simon & Schuster, ISBN 0684831643 (Apparent cure through early diagnosis, dairy and gluten restriction and education)
A Boy Beyond Reach, Cheri Florance, Simon & Schuster, 2003, ISBN 0743221079 (Another apparent cure through
a person-centred approach)
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