Unwrapping the Enigma

If you Google the word autism, you’ll find a wide array of websites, blogs, videos, and articles discussing what autism is. Nearly all of them will churn out industrialized one-size-fits-all definitions of what this disorder entails, lists of symptomology, poorly explored causes, various treatments, some effective, some not, and hundreds of support groups.

There are several ways to describe this disorder, through medical and biological terminology and approaches (both of which I’m admittedly still learning about and do not feel capable of discussing at this time), and through observable behaviors. But even observable behaviors are inconsistent from child to child and to pigeon-hole them into one intricate schema is like trying to hammer a belligerent puzzle piece into an ill-fitted space unable to contain such a complex shape.

The Diagnostic Statistical Manual Four TR (the psychology handbook of diagnoses) classifies the disorder as such:
-Social Impairment including deficits in non-verbal communication (eye contact, facial expression, body posture, and prosody); failure to develop peer relationships; lack of interest in social exchanges and activities; lack of emotional reciprocity

-Communicative Impairments including a speech delay or complete lack of speech not accompanied by other communication attempts such as gestures; in those who are verbal, the inability to conduct sustained conversation; stereotyped and/or repetitive speech; lack of imaginative play

-Stereotyped patterns of behaviors, interests, and/or activities such as obsessions with certain objects, subjects, or activities; rigidity to changes in the environment including changes to tangible items or routines; repetitive movement such as hand flapping, pacing, or complex body movements; occupation with small parts of objects

-Developmental delays such as verbal and motor skill deficiencies

This list has evolved from a very basic dichotomy in the 1950s, created by Dr. Leo Kanner and Dr. Leon Einsenburg, classifying autism on two main points: 1) A profound lack of affective contact, and 2) a repetitive ritualistic behavior which must be of an elaborate kind (1956). Throughout the years as various characteristics were observed in the general autistic population, more and more symptoms were added to assist in the diagnostics of the disorder, introducing the criteria presented by the American Psychiatric Association in the DSM above. While this list is frequently regurgitated onto the net in various forms and phrases, it paints a very cut and dry image of what autism should look like. But, as any parent in the autism community knows, your child is not like any other autistic child, the way autism affects each child is different and they are as unique as a thumb print. And as autism spreads throughout the population (in the 1950s, 1 in 10,000 were affected by it, today the ratio is 1 in 110), we are recognizing that even these requirements are not fully accurate in describing our children.

Social Impairments
One important note discussed in Dr. Michael Goldberg’s book, The Myth of Autism, is the fact that few if any autistic children nowadays meet the criteria of profound lack of affective contact, and even with the newly developed criteria of the DSM, the general idea being projected is that autism creates an individual so disconnected from society emotionally and socially they’re devoid of all attributes that make them decidedly human. During my time with my kids (each child I’ve ever had the pleasure of working with has come under the slightly possessive and affectionate title of “My Kids”), I found this to be untrue. While there is no doubt a social deficit and limited motivation to connect with the people around them, to deem them completely incapable of doing so is unfair and inaccurate. In highlighted moments of the day, I saw these interactions taking place and connections being built, strictly on their terms as only they would have it, but connecting nonetheless.

I recall a few examples of such, one being of two of our patients playing in the ever-popular trampoline of our playroom. Jumping side by side in parallel play, neither acknowledged the other with eye contact, with verbal exchanges, physical exchanges, or expressions such as smiles or laughter. Standing outside of this bubble watching their blank faces, it would appear that neither one even knew the other was there. Then, without a word, one turned and left the trampoline and trotted over to the swings. The other didn’t say goodbye, didn’t even turn and watch her go, she didn’t even seem to realize her peer was gone. She continued to jump for a moment before suddenly bouncing to the entryway and hopping out of the trampoline, joining her peer on the swings. Again, no eye contact was made, no greeting uttered as she climbed into the suspended seat. The two stared straight ahead of themselves, faces blank, aside from the occasional smile and laughter only the joy of swaying through the air unbridled could bring. But, the two were together. Given that humans are the desperately social primates we are, it becomes evident that interactions we've deemed “socially acceptable” and expected of us in daily interpersonal exchanges are at times, erroneous. Sometimes we don’t need to talk, sometimes we don’t need to smile. Sometimes, just being near another living breathing soul is enough. While it is important to express ourselves to one another in this world, it would seem these children have found an alternate route. Whether or not this can be counted as tantamount to a severe disorder, my thoughts on this must be saved for another blog.

Another aspect of autism that has been widely circulated to the general population is the lack of emotional recognition and reciprocity, and the desire to avoid affection. While I have seen struggles in respect to this symptom, I wonder how entirely accurate it is as well. With many patients, we worked to help them understand and recognize emotions in others and themselves. This involved intricate work with labeling smiley faces and sad faces, reading the telltale signs of facial expressions and prosody, and ultimately graduating to recognizing the emotions on actual people’s faces, and then their own. Many of my kids succeeded, being able to label others and even review photos and videos of themselves happy or upset and properly label their emotions. However, when in the moment, if they were screaming or crying, they could not appropriately state whether they were happy, sad, or angry. In this sense, having an intimate connection and understanding with their own feelings is a prominent deficit of autism. But emotional reciprocity? Not so much, based on my own experiences.

In the many kids we treated at this facility, I rarely if ever came across a child who didn’t like being consistently touched. At times they would pull away, sometimes they had to initiate the contact, other times they had particular people who could touch them and others who couldn’t (as previously mentioned, always on their terms), but they loved being hugged, squeezed, tickled, and kissed.

When it came to spontaneous emotional recognition and reciprocity, it was rare but present. During a particularly difficult time at work, I was in my office with a patient, taking a break from work and just watching her. She was scripting* her usual libretto and I became emotional as I ruminated on stressful events. A few rogue tears crept out of my eyes, and though she was facing the wall, she froze; her scripting stopped. Turning my gaze to watch her I saw her peering out of the corner of her widened eye, watching me. She stared for a moment, and I asked for a hug. She leaned in and hugged me, then pulled back. Watching my face intently for a moment as a few more tears escaped, she leaned in again and kissed my cheek.

Another time, struggling yet again, I had excused myself from the clinic and walked to a distant grassy corner to recuperate. A frequent walking path for clinicians and their patients, one small group soon came sauntering up the sidewalk. Recognizing from a distance that I was crying, the clinician stopped her patient and bid her turn around to afford me some privacy. Though a good 40 feet away, I could see the patient refusing. A typical trait of an autistic child suddenly forced to change an expected routine, I assumed she was frustrated because she wanted to finish her walk. Soon, though, I heard her shouts over the fall breeze. “Can I kiss Jae?!” she yelled. I signaled permission to the clinician, and the child came running across the grass. She leaned over and kissed me, then willingly turned around to return to the clinic without tantrum.

Given these inconsistencies with the diagnostic criteria and observed behaviors, the question becomes does the DSM have to change to describe autism more accurately? Or do these children even qualify as autistic to begin with?

There are many more facets to autism symptomology that will be discussed in the next few blogs, all of which require more individualized attention and time. Future topics will also include Autistic behaviors, tried and true ABA therapy techniques, Autism and its alleged connection with mental retardation, how autism affects the family and the marriage and much more. Please return soon.
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*Scripting: The repetitive verbalizations of dialog heard from movies, television, music, or everyday conversations, sometimes used for entertainment, other times used for anxiety management.