WHAT I HAVE LEARNED ABOUT AUTISM
A personal story by Richard Saffran
what IS Autism?
(and the related pervasive developmental disorders) is a severe
developmental disorder which, left unchecked, usually progresses
to developmental disability at a young age. The causes
of the disorder are largely unknown; they include genetic and environmental
(chemical and biological) factors, or some interaction of the two.
(Many in the psychoanalytic community once believed that lack of
parental nurturing was the cause, but that is perhaps the only factor
we now know is not important.)
SYMPTOMS OF Autism?
Symptoms may be present from or even before birth
(yes, Moms can tell), or appear gradually or suddenly after two
or more years of apparently normal development. Although some related
conditions such as Landau-Kleffner syndrome cause measurable changes
in brain activity, in most cases the only diagnostic information
is the child's behavior. Other biological markers are sketchy: there
is some evidence of altered neurotransmitter (serotonin) levels;
some children show slight physical changes, such as the shape of
their ears; there is a strong correlation with maleness and non-right-handedness;
and there is correlation with certain genes. There is about a one
in nine chance that a sibling will also have Autism.
EFFECTS OF Autism ON DEVELOPMENT
symptoms may include grossly delayed language or motor development;
atypical play, such as spinning, lining up, staring at, or feeling
toys (but no pretend play); lack of peer play or friendships; stereotyped
(repeated unchanging) body movements; or pronounced fears, crying
fits, sleeplessness, or noise sensitivity. In place of the typical
progression of skills, the young child with Autism may develop some
skills early, such as the ability to recognize letters and signs
(or even read), or the ability to make people smile by flirting
or acting silly. These strengths may mask the severity of the many
real deficits. (It is a common misconception that children with
Autism must be withdrawn; some are, but others are perfectly friendly.
Real, and tragic, isolation sets in later if they do not develop
the social and communication skills expected of older children.)
Older children may develop aggressive, hazardous,
behavior to such a degree that they require institutional care.
Most do develop language, but it may consist largely of “echoed”
words and phrases. If functional language appears, it is frequently
missing important social context. Asked to talk about a picture
of an activity, for example, the child may say “The boy’s shirt
is red and he has five fingers on his left hand and five fingers
on his right hand.” He may insist on extreme sameness, counting
every step to the kitchen, tantruming if interrupted or the number
of steps is not exactly 16. Although not all suffer severe symptoms,
individuals with Autism frequently have difficulty achieving independence,
forming stable relationships, or being free of anxiety.
There is strong evidence that many or even most
children with Autism are actually able to learn as much as typically
developing children, given the right environment. For many, there
may be no deficit at all in the ‘underlying’ (cognitive) brain functions
, but for some reason the information does not get in and skills
do not develop normally. There is, in effect, a learning ‘blockage.’
Some research points to the attention mechanism as a factor. As
infants, children who later are diagnosed with Autism are unable
to switch attention from one stimulus to another as readily as their
peers. (Can you read this and make sense of it while you are talking
on the phone?)
DEFINITION AND CLASSIFICATION OF Autism
We also don't understand well the ‘subtypes’
or boundaries of Autism. For any individual, professionals will
differ on what deficits may be due to Autism, and what may be due
to other disorders, such as ADHD,
“nonverbal learning disorder,” or other cognitive and learning difficulties.
This leads to a proliferation of related official and not-quite-official
diagnostic labels for people with different mixes of skills and
deficits: hyperlexia, semantic-pragmatic disorder, Asperger’s
integrative dysfunction, and so on. Many people put these into
the bucket “Autism spectrum disorder.”
It is a very mysterious disorder. No one understands
why our kids are the way they are, or can explain why their responses
to everyday things can be so very strange. The particular excesses
and deficits vary so greatly from one child to another that an explanation
or strategy that seems to work for one child may be a disaster for
another. We know mostly how little we know. One measure of a professional’s
ability to help your child is a willingness to admit how little
he knows, and a commitment to use your child's progress as the only
Having said all this, here are a few things that
are mostly true - likely to apply to most - or mostly false - concepts
that may work for an individual child here or there but probably
don't apply to most. Autism (and the related pervasive developmental
• Uncommon but not rare. The “accepted” incidence
is around one per thousand, but many parents in the USA report a
“head count” in their schools that gives an incidence closer to
one in every two or three hundred. Research in England gives a total
incidence of all Autism spectrum disorders at one in 160.
• A severe disorder. When an evaluator or administrator speaks of
“mild Autism” or “mild PDD,” ask, “What is a mild severe disorder?”
• Genetically linked to some degree.
• Evidenced as an impairment in learning by social imitation. Spoken
language, body language, the rules of play and friendship, are all
typically learned at an amazingly early age by observing and imitating
other’s behaviors. If our kids are to learn those things at all,
they need a lot of expert help.
• Related to overall brain functioning rather than one specific
Autism is probably not...
• Caused by entirely genetic or entirely environmental
• A “sensory disorder,” or a dysfunction of any
specific sense (hearing, balance, vision, and so on). Exaggerated
responses (fear, anxiety) to normal sensory stimuli are very common,
but the response is probably not simply a normal response to an
exaggerated or distorted sensation. (There may be a disorder in
how sensory information is processed, but it is not likely as simple
as “too loud” or “not clear.”)
• Caused by vaccinations.
The symptoms of Autism often show up suddenly after one to three
years of apparently normal development. Kids get lots of vaccinations
during this time so the odds are significant that “sudden Autism”
will follow a shot. This is a case where only careful statistical
analysis can untangle the facts.
• Highly treatable by drugs.
There is no medication specific to Autism. Some individuals do benefit
from psychoactive medications such as SSRIs (used to treat depression
and OCD), antipsychotics
(schizophrenia), stimulants (ADHD), or anticonvulsants (bipolar
disorder). Some get a lot of benefit, so careful trials may
be warranted. The dosages may be different - often lower - than
those used for the associated clinical condition.
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home page of this website: www.autism-help.org
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