ONH Consulting Newsletter- revised

I want to thank all of you for another four months of patronage and support of ONH Consulting.

I am still very busy serving our clients as well as preparing for another opportunity to present at the Fifteenth  Annual convention of the MAGIC Foundation, which is the primary organization that serves individuals with disorders of growth in the United States and Internationally.

I will have the opportunity to share my experiences as an adult with ONH in a panel discussion on Friday, July 25. I hope a few of you can make it to this exciting event.

I realize I haven’t published a newsletter in a while. One of the main reasons why is that I wanted to devote this issue to a topic that some of you have dealt with, especially if you have children with Autism characteristics or a diagnosis on the Autism Spectrum. The issue is what some experts refer to as “areas of special interest” and what I call “musical interests and interpersonal perseverations.” This is a complex topic and some of it is difficult for me to write about.

Many of you who have worked with or raised a child on the Autism Spectrum are probably all too familiar with your child becoming obsessed on a very narrowly defined area of special interest. He will focus on the topic in a repetitive, stereotyped manner- to the exclusion of most everything else. The interest in this topic can be narrow, very circumscribed, and all-encompassing. These interests can also persist for years and not go away without specific interventions. For example, I had a fixation on the word “dizzy” that lasted from the third to the sixth grade as well as musical and interpersonal perseverations that I’ll discuss later. Some interests of other children with ONH that I’m aware of have included musical groups (i.e. Rod Stewart and Eric Clapton), objects that make particular sounds (such as vacuum cleaners), people (teachers or other adults) and even social roles in symbolic play (queens, princesses, brides, etc.).

 In my view, these latter cases make understanding the characteristics of children with ONH especially confounding for families, caregivers and professionals alike.

Only within the past ten years has the tendency of children on the Autism Spectrum to perseverate been studied. Many terms of art have been applied to the tendency of some children on the Autism Spectrum (or who display characteristics of Autism) to fixate on a given topic, event, situation or sensory experience. Tony Attwood and Carol Grey, two of the leading experts on individuals with Autism and Asperger’s Syndrome, call these topics, “areas of special interest.”

Though much has been discussed about the Autism Spectrum since Leo Kanner and Hans Asperger independently described their first patients in 1943, writers in the field have only just begun recognizing the tendency of people with Autism and related conditions to perseverate on given areas of interest within the past five years.

Tony Attwood and others who have written about Asperger’s Syndrome in particular have expressed the importance of areas of interest in the lives of people who live on the Autism Spectrum. Most accounts of people who write about Autism- even adults who write about it from the inside such as Tenple Grandin- talk about their interests revolving around concrete, circumscribed objects. For Tenple Grandin, for example, it was her “squeeze machine.” For others, it can be trains, baseball scores, particular authors, or any number of highly specialized topics. Many children and adults can talk for hours in extreme depths about their area of interest to total exclusion of others.

As an adult with ONH who has worked with families of children with ONH, I find this focus on concrete topics to be extremely valuable. However, for me, it is incomplete.

As a child growing up with 20 /800 vision- near total blindness- I had no access to (or innate interest in) many of the things such as pictures or concrete objects that form the fabric of the worlds of many sighted children who live on the Autism Spectrum. Later in childhood when I finally became aware (and able to process and manage) the impact of my behaviors on others, I had to make a very conscious effort to do so. My world was a kaleidoscope of voices, sounds, smells and touch and some of the vague memories I have about my life before I was three were very inconsistent. Indeed, some of the emerging literature on the connections between blindness and Autism posits that many children with severe visual impairment have great difficulty understanding themselves as agents in their environments and the role of self.

This sounds somewhat abstract, but when you can’t see much of the world around you and you’re three years old, you have difficulty understanding your own place in it. When you have trouble processing information from your senses (sensory integration dysfunction) or your own position in space (proprioception) your world is topsy-turvy indeed. In this world of constantly changing scenes, events and sensations, certain things serve as anchors.

When I turned three, I began talking in complete sentences. Very soon after this, one of my main anchors was numbers. Numbers were reliable, and there was order and consistency in numbers. There was also variety in counting and the power of being able to put diverse numbers (with two and three digits or more) into sequence. There was also the wonderful power of music, which I’ve discussed on other WebPages and individually with many of you. My perceptions of music and numbers early in childhood are intricately linked. Much like Daniel Tammet, who described his world of numbers as a landscape of shapes and colors in his book, Born on a Blue Day, I associated numbers with musical notes. Indeed for me, numbers were complex musical melodies- every bit as detailed as the visual profiles Daniel Tammet saw in his mind.

With the tendency of many of our children to rock, flap our hands and engage in many other stereotyped behaviors and the link between the senses that can occur in some people on the Autism Spectrum, it is only logical to consider that some of us will also perseverate on special areas of interest or features of our environment.

For me, the first thing that my parents and I could really consider a perseveration was the sounds of the telephone network. I don’t even remember the first time I actually engaged in the behavior of constantly using the phone and dialing numbers. My parents and I think this interest actually started when I was about four. The winter I was four, the famous blizzard of 1978 hit our area, and there wasn’t anything to do that would stimulate me. I remembered spending literally hours upon hours dialing numbers and listening to the sounds of the calls as they traversed the electromechanical switching network of our local telephone company- Cincinnati Bell in my case- as well as the Long Distance Network.  I engaged in this fixation in some form or another until I was fourteen. Within a month of learning to tie my shoe and entering high school, my need to do this every day finally came to an end.

When a telephone call is routed from one switch to another, the first leg of its journey is usually a local telephone central switching office- typically in your neighborhood or an adjoining community. Generally, each switch handles calls from certain telephone exchanges. If your call is local, your area central office (the one that serves your telephone exchange) will just pass the call through to the destination office along a line called a trunk. If your call is long distance, however, your central office will route it to your long distance carrier’s telephone network. Once in the long distance network, it traverses a series of trunks that route the call to its destination.

As a child, I found this landscape of local and long-distance switching equipment to be an extremely diverse, intricate and utterly enthralling tapestry of sequential and predictable sounds. I later found out that Cincinnati was actually one of the first places to institute direct-dial telephone service (without an operator), and this made our phone network a virtual wonderland of divergent, complex noises. To me, many long-distance sounds were just as engaging as multi-part symphonies- or indeed- social interaction.

Unlike today, the telephone network of my childhood in the 1970’s and 1980’s consisted primarily of analogue, electromechanical switches. There were several different types of switches that local and long-distance carriers would use. Each had its own distinct pitch, its own timbre, its own background sounds, and indeed, its own distinct character and personality. Because long distance calls at this time were mainly routed over analogue trunks, you would hear some background noise on the line during your call. This white noise would typically start as the call entered the long distance network. Because the long distance network also had different types of trunks, the background noise for many cities also had a distinct sound, and I could identify a few cities just by the sound of this background noise.

Much of the content of my fixation with telephone sounds involved what are referred to as intercept recordings. Intercept recordings are those messages you hear when your call cannot be completed as dialed or the number has been disconnected. They can originate from both local central office equipment and long-distance telephone switches. When I was a child, Cincinnati Bell handled all local calls, while AT & T pretty much had a monopoly on the long-distance network of the time. At the end of these recordings, there was typically a group of numbers- referred to as a trailer. These trailers identified the actual switch where the recording I was listening to originated. There are many examples of these trailers on the Phonetrips Website, which has a link from the ONH Consulting Resources page. These trailers allowed me to identify the location of many of the switches in our local network and AT&T’s long-distance network in the United States and Canada. I soon learned every area code in the United States and would focus on these switches and how they interacted incessantly.

When I was  six or seven, hearing and recognizing the sounds of these switches and matching them with their locations was at least as important- if not more so- than recognizing the people in my life by the sound of their voice. It’s no wonder that my parents at this time considered the possibility that I had “Autistic tendancies.”

Music was also a very important part of my life at this time. I learned to play the piano when I was four and actually went to a summer program at a major manufacturer of grand pianos locally. However, I all but lost the skill when I started school.

Music was still a significant part of my life, as it is today. Music had literally allowed me to make sense of my world and environment in a way that is hard to explain. It integrates, it soothes, and when I was a child, it helped me process information.

Like many children with Optic Nerve Hypoplasia, I also perseverated on particular artists, styles of music, and especially individual songs.

One of the first songs that I remembered fixating on was “Blue Bayou” by Linda Ronstadt. I was about four and was finishing my second year at a summer camp for children with disabilities called Camp Stepping Stones. I had just started talking the year before. Like many of my early fixations or areas of interest, I don’t exactly remember the day it developed.

What I do remember is the absolute feeling of warmth, control and serenity I felt while listening to that song. It wasn’t just one aspect of the music, such as the harmony or the vocals, but the music as a whole. I wanted to listen to that song literally over and over, and my parents had to buy the album.

Not having access to the song at this time was distressing. The feeling I had was something that is difficult to describe. It is a type of strong, innate passion. I need to have access to whatever the fixation was- as soon as possible. I’ve actually describe the feeling a person addicted to alcohol or drugs experiences just before withdrawal symptoms or falling in love. It is a very intense, deep and difficult to manage feeling. At its worst, I can almost hear the fixation in my head as a faint buzzing. I soon began referring to these fixations as “sixings” and assigning them numbers- usually three digits.

In the few cases where I’ve actually used the term “sixing” in public or while writing, I’ve used it to mean a perseveration of the type many children with Autism Spectrum Disorders show. In reality however, I refer to a “sixing” as the emotional process or feeling, whereas perseveration refers to the  behavior of talking about the object of the “sixing” obsessively, without regard to the interests of others. Consequently, my goal for controlling “sixings” was recognizing them for what they were and preventing them from turning into perseverations.

Since interventions for children on the Autism Spectrum were at a very early stage when I was a child, “Sixing control” became a major part of my childhood as I tried to relate to my peers in the best way I could. Until I was in about eighth grade, I disliked interacting with peers, and the “sixings” I had as a child and teenager had to do with other adults’ likes and interests instead of what would be age-appropriate. This isn’t the case for many children with ONH who perseverate or show Autism Spectrum behaviors, but it was for me. The poem "In Memory of Karen Carpenter"on the ONH Consulting Website for example, is based on one such “sixing”, and I included it to show the importance of music in the lives of children with ONH.

I also deal with another type of “Sixing” for people, typically for teachers or family members. In public or in writing, I refer to this as an “interpersonal perseveration” or an “interpersonal area of interest.” This is because I will fixate on a person just as someone on the Autism Spectrum perseverates on an area of special interest, such as airplanes or weather balloons.

As a child, I would typically have these for teachers, and I had several from the first to the sixth grades and two or three in high school. I have also had them for members of my family.

Many of these interpersonal perseverations and “sixings” are very intense, and several of them have proven very difficult for me to manage in some situations without a huge amount of discipline, self-control and insight. In fact, the recommendations I’ve made for some of you and your children individually (i.e. Social Stories and some behavior management and redirection strategies) have come directly from managing “sixings” and active interpersonal perseverations.

I can write an entire booklet or journal article on a study of the interpersonal aspect of perseveration from my own experience, and what I’ve written just scratches the surface. However, I hope my own descriptions give you a view of what some of your children might be experiencing.

I’d like to conclude this special edition of the ONH Consulting Newsletter with some thoughts on the role perseverations and areas of interest can play in the development of some children with ONH. I need to qualify what I’m about to say with the disclaimer that much of the following information is based on my own experience managing “Sixings” and a few of the recommendations I’ve made to IEP teams for some of your children.

In his book, The Complete Guide to Asperger’s Syndrome, Tony Atwood has pointed out that perseverations- or areas of special interest- can be a powerful feature in the lives of many children with Asperger’s.  I believe this is true for all people on the Autism Spectrum, including those with ONH. They can soothe us, redirect us, serve as the strongest motivators- even offer crucial sign posts for the sometimes chaotic landscape that can be life. By the same token, perseverating can make learning, interacting and taking in new information extremely difficult. Dealing with a child who is constantly focused on a favorite object or topic of interest can be demanding, trying and emotionally exhausting. Redirecting an actively perseverating child can be extremely difficult and can lead to a wide variety of negative behaviors. I’ve also found that when that area of special interest is actually a person, things can become awkward. I believe that areas of interest or perseverations in children with ONH need to be handled with care, and many of the techniques and strategies applicable to children on the Autism Spectrum are also relevant to ONH. It is good to understand and empathize with your child if he or she is having them, but try to redirect them as much as possible. If the fixation is for an object or topic- such as vacuum cleaners- try to allow a specific amount of time to engage in activities related to the interest (30 minutes a day, for example). If you decide to do this, I recommend fading your child’s access to the area of interest, while encouraging interest in more age-appropriate and acceptable social activities. For example, the child who perseverates on vacuum cleaners would start by having access to his favorite cleaners for thirty minutes a day. After two weeks, this is reduced to 28 minutes, followed by 26 minutes for the next two weeks, etc. This process can take months and might not be possible for some children.

Areas of interest can also be powerful motivators for the child. One caregiver of a child with ONH who had a fixation on bridal accessories promised to take her to a bridal show if she met goals in her behavior plan at school. Since the Carpenters are still an active musical interest for me, I listen to a box set of their music to celebrate a new client, a request for a workshop presentation (especially if it’s out of state) and each anniversary of my business. I try to limit my listening to the Carpenters to these occasions specifically.

IF the perseveration is for a person, I’ve found that in a lot of cases- the person is an adult or other family member. This may not be the case for your child, however. Recognize that this person is a major aspect of what makes your child feel safe and secure. However, try to redirect your child away from the interest whenever possible and limit contact to specific, well-controlled  situations. Like other areas of interest, contact with the person can be a powerful positive reinforcer and motivator.

Like all aspects of raising a child with ONH, dealing with areas of special interest can be demanding. However, with some strategies, I believe that these interests can be managed and transformed into a positive and meaningful part of your child’s life.

I thank you again for your support and patronage.

Sincerely,

Christopher Sabine

President

ONH Consulting, LLC