If you have met one child with Autism, you have met one child with Autism

As lights burned blue on April 2, World Autism Awareness Day, many participated in the April campaign to bring awareness and acceptance to those living with Autism. With only a cursory understanding of what Autism means and its impact, I reached out to Dr. Whitney Loring, a Clinical Psychologist with Vanderbilt Kennedy Center, TRIAD Families First  Coordinator and Assistant Professor of Pediatrics and Psychiatry and Behavioral Sciences, to help me gain greater understanding of the diagnoses of Autism Spectrum Disorder.  With the heart of a teacher, she met me for lunch and shared her insight on the diagnosis of the Behavioral Disorder as well as what interventions and therapies are available. Parenting a child with an invisible disorder, I approached the subject just as I would If I were learning of the diagnosis for my own child. I was looking for a clear definition of what made Autism Spectrum Disorder such a large and diverse condition, how it would impact the life of the person receiving the diagnosis, and how I could best advocate for and be an ally to those who face this diagnosis in reality. It is my hope that through this week, we will learn together how to better appreciate and, in turn, serve the children and adults in our daily interactions within our community.

So what exactly is Autism?

With 1 in 59 children being diagnosed as having Autism Spectrum Disorder, displaying a broad range of conditions. Autism in no respecter of race, gender, class, nor nationality. I struggled with understanding what it meant to be on the spectrum. Cultural depictions of autistic people, such as in the movie Rain Man, had helped to form my impression of autism from an early age. However, this did not align with the children I now knew with the diagnosis. The statement, “If you have met one child with Autism, well, you’ve met one child with Autism,” seems to be prevalent within the community. The pathways to and the presentation of the behaviors associated to Autism are as varied and complex as the individuals who hold the diagnosis.  “An abbreviated way to explain,” Dr. Loring stated, “is that someone who has received an Autism diagnosis has a certain number and quality of behaviors in the two main categories of what make Autism what it is. So many of the other things, like these associated features, which people assume are part of Autism, aren’t.”

The two main categories for Autism diagnoses are the Social/Communication difficulties and then challenges with Restrictive Interest/ Repetitive Behavior.  It is important to understand that to be diagnosed there must be ”persistent deficits in social communications and interactions across multiple contexts.” For example, if a child is showing deficits of communicating in the school environment, but showing none of those deficits within the home, this is not consistent with someone with Autism. Further, the diagnostician of an older child or adult, would want to establish these challenges were not just recently developed, but instead that there is a persistent history of these deficits throughout their life. In simplest terms, there are guidelines for the thresholds that must be crossed in these two categories for there to be a diagnosis, whether the person be 18 months old or an adult.

Dr. Loring helped to explain these two categories a little further for me.  Within the Social Communications category a person with Autism struggles in ”reading, responding and using the thousands of unspoken social rules we follow, which are often subtly changeable depending on the person or situation that nobody sat down and taught us, but we just picked up on by being in the world.”  These social cues we take for granted guide so much of what we do.  Dr. Loring gave the example of personal space and riding in the elevator. In a given day, in a given building, a person would enter the same elevator twice. If the elevator was full, the neural typical person (one without Autism) would know to get into the space touching the people to make room for as many as possible. You would face forward, likely avoid conversations, etc. If you were to get into the same elevator, with only one person, there would be different rules for personal space. Same place, same actions, different rules. Likely, no one taught you the rules of personal space on an elevator. Instead, you picked up on the social cues of riding on an elevator and being in proximity to people and made cognitive choices about what to do. A person with Autism could struggle with this as reading these social cues are a challenge.  A person with Autism can absolutely learn these social rules, but there is likely going to need to be a lot of support and explicit instruction.

Associated features and conditions of this category might include social anxiety or isolation due to trying to interact in social situations. The autistic child might withdrawal due to trying and failing. Another child may be uninterested because they can not read the social cues, but when they try to, they are unsuccessful.  This child, who is unsuccessfully trying may become frustrated or upset. A person who does not understand the diagnosis might try to attribute these secondary conditions to the autism. For instance, language ability is not a part of the autism diagnosis. The range of language capability of the autistic child could be that of non-verbal to verbally fluent, and everything in between. The same range of cognitive ability is present in the spectrum of autism. There are those who are cognitively severely disabled ranging to those who are extremely gifted intellectually. The language and cognitive degrees of people with Autism can fluctuate to such a great degree because language and cognitive capabilities are not a part of the diagnosis.  While there is increased risk of verbal and cognitive disabilities for those diagnosed with Autism, it would be more accurate to say that this person has Autism as well as a cognitive disability. “What is unique to Autism in regards to their communication is within whatever level of communication they do have, their ability to use that language capability with flexibility across multiple situations is harder, especially if there is something within the situation that is overwhelming or new.”

Dr. Loring explained an Autistic child could be speaking fluently within their language skill on one day and the next day be unable to obtain any fluency. There may be misunderstanding by those observing. The observer might say, “I know they can speak about this, they did it yesterday.” However, in the current situation, there may be something, whether it be a difference in sensory perception or how the child is feeling that causes them to essentially “lose their words.” Neural typical people might best understand this by thinking of a time they became so angry about something they could not think of what to say. It was not that they lacked the ability to say anything, but under that condition, they were unable to speak. Unable to reach the words they would use to communicate. Outside of the intensity of the situation, maybe in the car ride home, while alone, that same person may have thought of a hundred things to say once the stress of the situation was over. While not a perfect equivocation, this universal experience may help bring understanding to what is a continual occurrence for the person who is diagnosed within the Spectrum.  This same concept can be used for the person with Autism and non-verbal language capability, who might be using their behavior to communicate.  If not given the skills to find their “words”, even if they are non-verbal and therefore communicating through actions, it is easy to understand the frustration of wanting and needing to express themselves, especially in crisis and being unable to do so, regardless of verbal skill.

In the restricted interest/ repetitive behavior category of autism there can be a lot of misperceptions because these behaviors are easier to see. Within this category there can be erroneous all or nothing statements, e.g. “All kids with autism don’t like loud noises.”  or “All kids with autism have some special talent.” Instead it is about how each individual child reacts to the things within their environment. Categorizing generally all children with autism is as big of a mistake as categorizing any group. The reaction of the autistic child to change or being out of their routine may result in rigidity.  The autistic child may develop a very strong interest. “That strong interest, for one child, may be flipping this cup over and over. For another child it might be English Literature,” Dr. Loring stated. “It is something the child just focuses in on.” The sensory piece of this category comes into play. We might all have a sensory stimulus that impacts us greater than it would someone else, whether it be the brightness of a light, a particular smell, or maybe one particular noise in a sea of noise that affects us.  Different children may be more sensitive to some sensory stimuli than others.

“It is the things within these two broader categories of Social Communication and Restricted Interest/Repetitive Behaviors which make autism what it is. All the other things we can see, the intellectual disability, the anxiety, the gifted intelligence, the this or that, are all additional associated features that aren’t what determines if someone on the spectrum or not. It is instead the pieces from those two main categories.”

As I was piecing this all together, I likened Autism and the associated features to the situation where my grandfather had lung cancer. Because he had lung cancer, he was more susceptible to pneumonia. The lung cancer and pneumonia were two different things, but pneumonia would be my grandfather’s associated diagnoses. This is the same with Autism and issues with cognitive delays, verbal limitations, high anxiety, etc.  Having Autism makes a person more susceptible to these issues, however, just as not everyone with lung cancer has pneumonia, everyone with Autism will not have particular issues determined to be associated features. Understanding this basis of the diagnosis, on a very elementary level, helps us to understand how it is that a non-verbal three-year-old girl who avoids eye contact can have the same diagnosis as a highly intelligent, verbal twenty-five-year-old who may be able to mask his diagnosis.  Often the associated features that are exacerbated by the autism have the larger effect on the child’s life than the autism itself.

Throughout this week, I will continually refer to my time with Dr. Loring. Her thorough explanation of Autism and the associated features, the challenges and support systems of the person diagnosed with Autism, as well as the importance of understanding important governmental policies, Neuro-Diversity movements have broadened my understanding to the beauty and challenges of the Autism Community. Her explanations were intentionally simplified for my better understanding. As a caveat to these discussions, if there is mis-information found in the context of this week’s posts, it should be assumed that the mistake was mine and my misunderstanding of what was presented by Dr. Loring.