I would like to dedicate this latest issue of Adult Perspectives to one of the most common behaviors of children with Optic nerve Hypoplasia and other conditions connected to the Autism Spectrum, echolalia. Put quite simply, echolalia is the exact repetition of a word, sound or phrase heard by another person. it is often meaningless and can sometimes have a musical or sing-song quality. For example, when a teacher asks a child with echolalia a question like, "How are you today?" The student responds with, "How are you today?" They might continue to repeat the question over and over until redirected or tired. Echolalia can be immediate, in which the repetition occurs immediately after being heard, or delayed, in which there is a delay between the child's hearing the sound, word, or phrase and their repetition of it.

Echolalia is a complex and multidimensional behavior that can be difficult to unravel. It is a behavior that many children (and some adolescents and adults) with Optic nerve Hypoplasia and other neurological differences can engage in routinely, and it can also go together with other behaviors such as hand-flapping and rocking. Echolalia can be an annoying, vexing and socially problematic behavior for any number of reasons.

Like other behaviors associated with the Autism Spectrum, experts and clinicians working with children with blindness, visual impairment, and Autism Spectrum Disorders have held many divergent views of the function of this behavior. Early experts on Autism often attributed echolalia, along with self-stimulatory behaviors such as rocking and hand-flapping, to sensory deprivation, poor maternal bonding, and in the case of blind and visually impaired young children, lack of visual input. Some young children who are blind from various etiologies engage in echolalia and other "Autistic-like" speech patterns such as pronoun reversal as part of their development. However, while many blind or visually impaired children outgrow their behaviors as their social skills evolve, for some others, including many with Optic nerve Hypoplasia, these behaviors can persist into adolescence and adulthood. They often require support from professionals and constant, conscious awareness to manage.

There are still many differing views of why children with Optic Nerve Hypoplasia and others on the Autism Spectrum use echolalia as part of their everyday speech. For many unable to understand the meaning of language, it can be a means of imitating the speaker. This is a reasonable explanation for this behavior in some children, but it does not consider why other children with advanced expressive language skills--like me, for example--engaged in echolalia throughout childhood and still repeat themselves at times. Others have viewed the behavior as a form of protest, a rudimentary way of labeling patterns of stimulation in their environment, or a way of understanding what is said.

I decided to write this blog after attending a webinar on educational strategies for families and early intervention professionals working with children with Optic Nerve Hypoplasia ages 0-3 and their families hosted by the Family Connect Center of the American Printing House for the Blind and presented by two early intervention teachers from the Illinois School for the visually Impaired. Several leading professionals serving children with this condition attended.

While I agree with most of the views on echolalia discussed in this webinar, as an adult with Optic Nerve Hypoplasia who engaged in this behavior as a child, I have my own perspective on this behavior clinicians and family members need to consider. As the presenters of the Family Connect Webinar clearly articulated, for many children, Optic Nerve Hypoplasia is as much a neurological condition as an ocular disorder. Critical brain structures such as the Hypothalamus are often affected, leading to poor connection between the left and right hemispheres of the brain and limited ability to self-regulate. It can take extra time for a child to process what is being said. Since one of my areas of interest as a young child was telecommunications, I like to compare the process of communicating with a child with Optic Nerve Hypoplasia to communicating internationally over a satellite connection. If you have ever made an international telephone call or watched an overseas news broadcast, there is usually a delay that can be if five seconds or more between the two sides of the conversation.

In this context, echolalia fills this gap in communication, allowing the child to engage in rudimentary information processing--like repeating the transmission of information over a slow-speed cable or satellite link--until they can fully process the speaker's words and respond accordingly.

Though I learned to speak in complete sentences when I was 3 and was considered to have superior verbal abilities growing up, I still engaged in echolalia throughout my childhood and adolescents. Sometimes, I still catch myself doing it to this day. If you have any access to my blog or seen my posts on Facebook, seen the videos on my YouTube channel, or spoken with me directly, you will realize right away that I am hardly nonverbal. I have no reason to repeat what others are saying to me to imitate, confirm what people are saying to me, or engage in any form of protest. I certainly have more sophisticated ways of seeking visual input than a child's attempts to do so through simple repetition.

There is another form of echolalia that I experience that I have never seen delineated in the professional literature on this topic. I refer to this as "associative echolalia." In her 2000 article "My Mind is a Web Browser: How Autistic People Think", noted author and neurodiversity activist Temple Grandin describes her mind as composed of two separate parts, a frontal cortex which acts like an operator, and the rest of her brain, which stores and retrieves information like a computer. She describes her thinking as accessing visual images--like a web browser, which links associated images. For her, this process can go off on tangents, because "Visual thinking is nonlinear, associative thinking." Now imagine this kind of nonlinear, associative processing occurring in someone with almost no vision who thinks in terms of musical tones, numbers, and discrete voice profiles, and you might have a sense of my thinking as a small child with Optic Nerve Hypoplasia. Imagine thinking in tones instead of "Thinking in Pictures." Indeed, it was natural to go off on similar associative tangents. Many of these led back to special areas of interest or obsession. That is, until I learned that I had to manage these behaviors in junior high and high school.

As a child, I possessed a full library of associations for familiar words and phrases in my life. While some consisted of my own phrases which I would repeat over and over in response to hearing a given phrase, some others were comprised of phrases that I heard others said, like having a tape recorder in my head. Indeed, my mother, in retrospect, interpreted this as echolalia. Certainly, the behavior met the definition of such. this is why I refer to this process as "associative echolalia" or "associative thinking." An example of this follows.

If you read some of my blogs in the past, you might know that my primary area of interest was the sounds of telephone equipment, local and long-distance networks used during my childhood, and area codes. One of the hundreds of associations I developed in childhood was the number 502 with horses, luck, or winning games. If somebody mentioned horses, I might even enunciate the number 502 during this time.

So how did I come to deeply associate the number 502 with horses, games, and luck? It turns out that 502 is the area code for Louisville, Kentucky. What major sporting event--often called the fastest two minutes in sports--happens on the first Saturday in May in Louisville? I have many, many associations that work like this. Some of them are powerful and deeply resonate with me to this day, even though they are not logical or have any meaning outside of my own thought process. Associative echolalia can be either immediate or delayed, but I believe most of the time a child exhibits delayed echolalia, there is some type of association with something in their immediate environment.

I hope the concept of associative echolalia is a topic that can be explored through further research, as there are aspects of this behavior and brain development that are still poorly understood. Echolalia, like many of the behaviors of children with Optic Nerve Hypoplasia and Autism Spectrum Disorders, is complex and multifaceted and relates closely to other behaviors and characteristics. While it is perceived as socially unacceptable and inappropriate, it can be a vital stepstone to effective and independent communication for many children with neurological differences. I hope this article stimulates discussion and research on the many aspects of this behavior and its role in the development of children with various disabilities.

Sincerely,

Christopher Sabine
President
ONH Consulting, LLC