Autistic Spectrum Disorders: Silent Alienation
Remember when it was thought that autism meant a child or adult who would not speak? A person who had a remarkable memory for numbers and lists, but who could not carry out a normal conversation? That was when autism was defined as a single set of diagnostic criteria. Like any diagnostic group, Autism began to be studied carefully and longitudinally, and like everything else, it was found that “Autism” by itself is not really just a specific set of symptoms and it can have quite a bit of variability to it. That is why today I think the more proper term is Autism Spectrum Disorders, because there is such variability to it. Think about the spectrum of light as we are familiar with: it includes the measurable electromagnetic energy with very short wavelengths (gamma rays) to very long wavelengths which are miles long (radio and television waves). Somewhere in between, are the wavelengths which are visible to us: Visible Light with wavelengths between 400 nm and 800 nm, enabling us to see colors from blue- violet to red. Everything else is not visible to the human eye. We can measure it and feel some of it, but otherwise can’t tell if it’s there unless we become damaged by it. The point here is that there is a huge continuum (spectrum) of the physical properties of electromagnetic energy which varies in how it interacts with its environment.
Likewise with the Autistic Spectrum, there are those with severe forms in which they have little or no functional speech and those with milder forms who have excellent verbal skills. In the American Psychiatric Association’s publication, Diagnostic Statistical Manual, Fourth Edition (DSM-IV), there are several separate diagnoses within a category called “Usually First Diagnosed in Infancy, Childhood, or Adolescence”. The separate diagnoses include, among others, Autistic Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, Asperger’s Disorder and Pervasive Developmental Disorder, Not Otherwise Specified (Including Atypical Autism).
Autism was first clinically identified at Johns Hopkins Hospital in 1943, among a group of 11 children and was called infantile autism syndrome. About the same time an Austrian scientist, Dr. Asperger, identified a mild form of autism which is now called Asperger’s Disorder. The important point here is that early identification is very important because remedial treatment can be initiated early on. Parents are usually the first to notice that there is something unusual about their child. Reviewing home videos of the child’s behaviors and social interactions can be helpful in obtaining qualified screening and multidisciplinary assessments, to determine if the child meets diagnostic criteria for an autism spectrum disorder. In my experience, parents needs to follow their instincts if they think there may be a problem with their child’s development. If the child’s medical provider won’t at least do some screening tests, the parent needs to find another medical provider. Most pediatricians should be knowledgeable about what to empirically look for and refer to a team of specialists for a complete assessment. This team usually includes a Psychologist, Pediatrician, Neurologist, Speech Therapist, Occupational Therapist, and perhaps a pediatric nurse or other professional well trained in autism spectrum disorders. Early interventions programs are also good sources of screening children for many developmental delays.
Like anything else, there is a steep learning curve for parents of children with autism spectrum disorders. There is a lot of information out there, much of it unreliable, by people who only spout off their own opinions. There’s nothing wrong with bloviating, but parents need to be careful about the accuracy of what they may read on the internet. Stay with reputable websites, associated with Licensed Professionals or credible Research and Medical Centers. If the author of the article claims to have some title or degree which you’ve never heard of or are unsure of, check it out. Many people claim to have Ph.D.’s which they receive from some online “institution”: this is not the same as a degree earned from an accredited university, it’s just a bunch of letters which mean nothing.
My advice is to stay focused on one problem at a time, let medical providers and educational specialists know that you will cooperate with them but that you would like some definitive answers and a workable plan by a reasonable, specified date. Then get ready to work with your child, along with the professionals. Research has shown that the children whose parents are part of the treatment team make the best progress.
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About Dr. Virginia
As a licensed Psychologist practicing Cognitive therapy, I work with my clients to help them identify the personal issues that are preventing them from achieving a more satisfying and well-adjusted life.
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