Discussing Autism

Although there is no cure for organic Autism there is a cure for Institutional Autism, an acquired post-institutionalized syndrome. My son, AJ, has Institutional Autism, Sensory Integration Dysfunction, possible Fetal Alcohol Syndrome, multiple chemical and food allergies and intolerances, developmental and speech and language delays, and Post Traumatic Stress and Anxiety. He is only 4 years old.

AJ was adopted from Arkhangelsk, Russia in July, 2005 at 26 months old. Although he was completely nonverbal in Russian he tried hard to understand our English and his very first words were “wow” and “all done” in response to the tasty Chicken McNuggets we purchased for him in Moscow.

After returning to our home in the US we started to notice AJ’s autistic-like symptoms. We had not noticed before because everything on our trip to Russia was hectic and a blur. We began to contact local specialists and do our own research on autism. We even sought out Dr. Ronald S. Federici, one of the most innovative neuropsychologists in the adoption field. He gave us an informal diagnoses of Institutional Autism.

Federici states in his article Institutional Autism (an excerpt from Dr. Federici’s book, Help For The Hopeless Child: A Guide For Families) that the child from the post-institutionalized setting does not fall into any of the classic definitions of classical autism, Rhetts disorder or even childhood disintegrative disorder, although there is certainly a “disintegration” once a child has remained in an institutional setting.”

The traditional Symptom Checklist (or Red Flag List):

Speech and language absence or delays. Inappropriate laughing and giggling. Echolalia (repeating words or phrases in place of normal language).
Abnormal responses to one or a combination of senses; such as sight, hearing, touch, balance, smell, taste, reaction to pain.
Abnormal ways of relating to people,
objects and events. (Inappropriate attachment to objects; don’t seek cuddling )
Spins objects.
Sustained odd play.
Uneven gross/ fine motor skills.
Not responsive to verbal cues and acts as deaf.
Little or no eye contact.
Insistence on sameness; resist changes in routine.
Noticeable physical over activity or extreme under activity.
Tantrums; displays extreme distress for no apparent reason

Unfortunately, AJ had all of those signs. We have had him evaluated for Autism by numerous professionals and because he has social skills and is clearly attached and responsive to us he is not and will probably never be labeled as organically Autistic. However, the only times that he has been evaluated are when he has been on a gluten/casein free diet (an Autism Spectrum Diet said to improve symptoms) so his testing may have been skewed.

How did AJ get this way?

Federici also states that “It has been well documented that many of these children have been found to be tied to their cribs or isolated and sheltered from human contact. Combined with profound medical, nutritional and often physical neglect and abuse, these children regress to very primitive states to where any and all type of sensory-motor, speech and language, and even intellectual abilities have become stagnated and, over the course of time, typically regress and deteriorate to levels where they appear truly mentally deficient when this was not the starting pattern in their lives. ”

We believe that AJ was swaddled in a crib for much of his young life. He was hospitalized for his first 3 months and then moved to his orphanage wherein it was found he was allergic to milk. They switched him to soy formula but never took milk products out of his diet. They also never discovered his banana and oat allergies (which led to numerous bronchial infections). Poor guy never felt well. So, over the “course of time”, AJ never developed his sensory-motor skills, speech and language, social skills, etc. He learned to stimulated himself to pass the time and entertained himself by staring at lights and listening to background noises (thus his fascination with lights and hypersensitive hearing).

I often stop to think about what life would be like for him if he were still there…would he have regressed even further? Would he have learned to speak? Would he have ever developed his zany sense of humor? I don’t think he would have and it frightens me.

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