About ASDs
The Autism Spectrum: Variations on a Theme
Date Last Revised: December 10, 2009
Autism Spectrum Disorders (ASDs) are conditions characterized by the three core deficits of autism: problems with social relatedness; difficulties with communication and language; and restricted, repetitive patterns of behavior, activities or interests.1,2 The word “spectrum” expresses the variability within and across these areas of challenge, for there are many possible combinations and levels of ability and disability.
For example, a person with actual Autistic Disorder (that is, autism) may have no speech, or have acquired a rich vocabulary after an initial speech delay. He or she may be mentally retarded, or have an average IQ; be socially withdrawn or socially active but in an oblivious, eccentric way; be attached to an inanimate object, like a spoon, or fixated on lining up toys in a certain order. Add into the mix conditions that are autism-like –such as Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)—and there is even more variation. Yet there is something –a certain “feel”, a basic sameness to their difficulties—that ties everyone “on the spectrum” together.
The Autism Spectrum Disorders
Now said to effect 1% of the children in the United States,3 the Autism Spectrum Disorders are having an enormous impact. Families are on the front lines, struggling to find services and therapies for their children, while school districts, health care systems, and public policy makers scramble to respond. Meanwhile, there is almost no data whatsoever on the situation of adults with ASDs.
But what are these disorders? What may a person with a certain diagnosis actually be like, and what daily challenges does he or she face?
Here, we provide a description of each of the Autism Spectrum Disorders:
- Autism – the Defining Disorder of the Spectrum
- Asperger’s Syndrome
- PDD-NOS
- Rett Syndrome
- Childhood Disintegrative Disorder
For a detailed picture of the areas of difficulty individuals with ASDs face, please refer to Challenging Behaviors.
To find out how experts are thinking about and making sense of ASDs, see Understanding Research.
Unlocking the Spectrum: The Search for Meaningful Subtypes
We have all sorts of diagnostic labels and criteria for Autism Spectrum Disorders (ASDs) in the here and now, but there is a problem. These have been developed based mostly on clinical history and observation of functioning.4 Professionals see cases, and some cases appear to be alike; after a time, classification systems are created, and people are grouped under one category or another. The trouble is, we are basing all of this on non-genetic, non-medical, and not-very-easy-to-measure external behavior and traits.
For example:
Jenny suffered a major speech delay, but has overcome it and speaks with only the slightest of impediments; she is socially aloof, preferring to be left alone to line up her My Little Ponies in a specific, regular order, and tantrums when anyone interferes with her solitude. Conclusion: Jenny has autism.
Johnny talked on time, displays motor clumsiness, can't interact with his peers successfully at all, and is obsessed beyond reason with Yu-Gi-Oh. Conclusion: Johnny has Asperger’s syndrome.
But…across the spectrum, are there really distinct conditions, truly different from one another, caused by different genes or environmental exposures, or resulting in different neurology or behavior? Since ASDs are a complex spectrum of disorders, researchers have been trying to identify meaningful subtypes of autism based on observable and measurable genetic, biomedical, and behavioral traits.5,6,7
Basically, we are beginning to think of ASDs the way we think of other complex conditions, such as cancer. At one time, cancer was seen as one, monolithic disease. It was just cancer, the Big “C”. Our understanding was limited, and fatalities were high. Then something changed. Cancer was no longer viewed as a single disease; rather, it was seen as a family of many diseases that effect different organs in different ways. Once we began to understand that cancers are different, we were better able to find specific causes for each kind…and to develop treatments based on a detailed understanding of exactly what was going wrong.
There is a quest underway to unlock the mysteries of ASDs in the same way: by finding meaningful subtypes. If we can identify specific forms of autism, with specific causes, we will be in a much better position to discover more effective treatments. In this direction lies hope for the future.
For more information on the progress being made to identify autism subtypes see:
U.C. Davis M.I.N.D. Institute: Autism Phenome Project
Through It All: Valuing the Individual
Diagnostic categories and labels do not always tell us all that much about any one individual’s functioning. It is not even so simple a thing as deciding where someone falls “on the spectrum”, for each individual is differently abled in different areas. One person may have a lower IQ, but fewer sensory issues and less obsessiveness, for example, while another may have a higher IQ, but severe sensory issues and major fixations on rituals or special topics. Which one, then, is “higher” functioning? Which one is “lower”?
What is important, above all, is to see each person with an Autism Spectrum Disorder as an individual first. Each person has their specific set of strengths and weaknesses, and beyond that mere tally of ability, their own personality, spirit, and will. Honoring that must always come first.
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