Parent's personal story about diagnosis of Autism


A personal story by Richard Saffran


what IS Autism?

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 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.



The early 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 (It is a common misconception that children with Autism must be withdrawn; some are, but others are perfectly friendly.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, or self-injurious 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?)



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 Syndrome, sensory 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 sure guide.


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 disorders) is...


• 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 site..


Autism is probably not...


• Caused by entirely genetic or entirely environmental factors


• 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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Copyright 1998-2006 Richard Saffran. This content may be redistributed provided (1) my text is not substantially altered and (2) my authorship is clearly attributed. Copyright otherwise remains with original authors.

A parent shares a personal story on what he has learned about Autism through interventions for his son on the autism spectrum