Learning to Listen

In 1998 I had the opportunity to visit The King Center in Atlanta, Georgia with a friend and his mother. This friend had two special qualities. First of all, he was on the autism spectrum and second, he was fascinated with history. As we walked through the streets from the train station, he rewarded me with a continuous monologue of everything we were seeing from a historical perspective, including who all of the streets were named after and the roles these people played in Martin Luther King Jr.’s life. I was happy to listen in silence. It was a gift I will never forget.

Once we got into the Freedom Center, we separated and each walked through on our own, studying the photos and reading all the descriptions posted. The tears flowed down my cheeks as I read the stories, one after another and compared them with what I was currently involved in, my work with autism. For I, too, had a dream at that time. A dream to have everyone on the autism spectrum living lives in which they were truly understood and respected, free to share their stories and abilities with the world.

Ten years previously to this visit, I needed a job. I had graduated from university with a degree in psychology and had student loans coming due. However, jobs were very scarce in the community I was living, especially in the field of psychology. One day I got a phone call from a psychologist offering me a job I hadn’t applied for, working with people I didn’t know existed. I could not refuse it.

The organization that hired me looked very good at first glance. Our province was in the midst of moving disabled people out of institutions and into communities. This organization had numerous rural properties around the province which they were using as group homes for adults on the autism spectrum with the goal of keeping these residents busy doing farm chores. They also had an apartment complex in a major city where they housed the more independent individuals, giving everyone a future goal to work towards. They operated a delicatessen in this city, which not only supplied employment for those living there, but also provided a place to sell the produce from the farms. The final goal was to have each of the residents moving out into the community on their own, complete with all the tools that they needed to reach self-sufficiency. I had been raised on a farm and recognized the many benefits of this system. I was excited to have the opportunity to be part of it.

The organization had an incredible handbook that contained the vision of the organization, the mission statement, and outlined all policy and procedures in great detail. It described an autistic person as one who is “out of control of their body” and that our goal, as staff, was to teach them control. This definition of autism had been developed by the psychologist who owned the organization. Since I had had no contact with anyone with autism that I was aware of, everything she told me seemed logical.

On the other hand, I must admit that I witnessed what I would describe as abuse during the initial visits to the apartment complex in the city and at the headquarters of the organization, which made me question if I really should take the job. For example: if a resident wasn’t doing a task well, a staff member would begin to scold him loudly. This would bring other staff members running and they too would begin yelling at the individual, claiming that they had seen what was happening. In no time, the individual was surrounded by staff members all yelling at him. It made me very uncomfortable, especially since I knew that only the first staff member had any knowledge of the incident in question. I talked to the psychologist about this concern. She assured me that they only used this tactic to get the individual to understand the importance of staying on task. Her explanation did little to relieve the discomfort I felt. However, I decided to take the job anyway. I rationalized that we would be far away from what was happening at headquarters and that as the supervisor, I would be able to ensure that this type of behaviour from staff members would not be tolerated where I was working. It didn’t take long to learn how wrong I was.

In the meantime, I returned home and started my job as group home supervisor. There were three residents in our home. A young man in his mid-twenties (J), who was able to talk and to read. He spent most of his time either talking about the 2nd World War, which was his obsession at the time, or reading the stacks of National Enquirer magazines that someone had donated to the ‘ranch’ as it was called. The second resident (A) was 21 at the time. He was completely nonverbal and spent most of his time in a state of such rigidity that you felt like you were going to break him if you attempted to move him. The third was the only child in the organization at the time (D). He was nine years old and unable to do anything on his own, which included speaking, feeding himself, dressing, going to the bathroom, and so on. He used a lot of different autistic behaviours such as having no eye contact and walking on his toes, which we were informed must be stopped. His most severe reaction was headbanging. It was heartbreaking to see this child slam his head repeatedly into the walls or the floor, especially when you knew it was his response to having been forced to stop another of his behaviors.

I certainly managed to get off to a rocky start. At that point I knew absolutely nothing about autism or about the three people I was supposed to be caring for. I had been told that they were out of control and that my job was to teach them to control themselves, using whatever tactics were necessary. However, there were few instructions as to how exactly we were to accomplish this and many of the controls that were in place didn’t seem to be working. Neither did anything that was demonstrated to me while I was at the headquarters.

The majority of the controls concentrated on using physical restraint of one type or another and typically led to even more extreme behaviours. In other words, if someone flapped their hands, the staff member physically stopped the flapping by holding on to the hand so it couldn’t be flapped. Other controls involved making adaptations to the environment in hopes of teaching the control. For example, one of the men wet the bed every night. The adaptation that had been put in place was that all the water in the home was turned off so that he couldn’t drink as much as he wanted, in an attempt to keep his bedding dry. It didn’t work. His bed was still wet every morning and we were all frustrated as we were constantly having to crawl under the sinks to turn the water on and off whenever we needed it. I also felt it was cruel and unhealthy for this young man to go without water when he was thirsty. It didn’t take me long to throw up my hands and leave the water turned on, much to the relief of everyone in the home. I got my first black mark at headquarters for doing that.

Life our ‘ranch’ certainly didn’t match the descriptions of our policy manual. J spent most of his time hiding in the closet of his bedroom. A was rigid beside us, not willing to try to do anything. D needed the same care as an infant. Whenever we tried to ‘make’ them do something we ended up bruised and bleeding. The same thing happened when we tried to stop them from doing the things we didn’t want them to do. The staff struggled along trying to teach control, in the midst of also doing all of the chores that keeping up a home and living on a farm required. We all went home from our shifts exhausted and frustrated, wondering if anything we were doing was helping.

At the same time, I was also dealing with the reality of what was printed in the policy manual and what we were expected to do as staff members. Daily data sheets were kept for each of the residents. We were carefully taught how to record progress on these sheets in tiny intervals to convey the message that improvement was ongoing but not at a rate that would make parents decide to remove their children from the premises. The vivid stories I was told before I was hired of improvements that the residents were experiencing lost their lustre, as I read previous reports written by the different placements our residents had been in throughout their lives. They documented that the residents were able to do everything the psychologist claimed to have taught them, long before they arrived on the ranch.

I really can’t remember what started the major revolt which changed my whole way of working with those on the spectrum. I expect I was trying to ‘control’ J in the way I had been instructed, but it wasn’t working. I was only a few weeks into the job when I found myself in the corner of the dining room with the J coming at me with a chair raised over his head, fully intent on bringing it down on mine. In the midst of my terror, I knew instinctively that attempting to teach control in this moment was likely going to lead to a serious injury. Instead, I became very calm and silent, hoping that my demeanor would calm him down. Thankfully it worked. In that moment I learned a major lesson that has coloured everything that I have done since. This is the importance of listening to someone, whether through their words or their body language, no matter what is going on, instead of forcing my expectations on them.

At that moment I decided I was going to give up control and try something else. As the weeks flew by, I and the staff began to develop a real working relationship with our 3 residents. I joined J in the closet and spent hours quietly talking with him. I insisted that the staff learn history rather than stopping him from talking about World War II, for he did know what he was sharing to a depth that few people ever reach. We got rid of all the tabloids and stocked the home with real newspapers and books for him to read. I insisted that A tell me when he wanted a drink with gestures, instead of getting drinks himself, so that we could leave the water turned on. He complied. In the beginning he led us to the sink, but time he began to make a sound in his throat to indicate he was thirsty. No, it wasn’t an actual word as such, but it was definitely clear communication. And I prompted the little one to do things on his own rather than doing everything for him. Gradually everyone began to work together in a harmony that wouldn’t have happened if we had continued to insist on teaching control.

The first major shift happened when A gave up being rigid. It was rather shocking at the beginning as this young man, who had been like a board before, using only tiny, tight footsteps to move about, now leapt across the lawn like a deer. I shared my concern about him with a friend using the term “we’ve ruined him” and she reminded me of the cripple that Jesus had cured who “leapt”. She said “can you imagine what difference it makes to the muscles when you let go of the rigidity”. We relaxed and celebrated this freedom with him. Over time the leaping gradually decreased. Soon he was able to walk and to run like anyone else.

Although the staff continued to do the majority of the farm and household chores, the residents no longer resisted being with us and in time began to join us with tasks of feeding the chickens and ducks, gathering eggs, bringing in the wood for the fireplace, mowing the lawn and weeding the garden. They also helped making meals, setting the table and clearing up afterwards. Keeping them busy meant that they spent less time engaged in repetitive behaviours. I was happy to see that this claim in our policy manual was finally being met.

One evening A had another major breakthrough. After 21 years of silence, he spoke to me. It was bedtime and I was sitting in the doorway of J’s bedroom writing up the notes for the day while keeping an eye on everyone. J and D were in bed, while A was on the toilet. We had discovered that he had a habit of not completing that task with a result of us having to deal with dirty underwear at a later point and so we were gently insisting that he stay until he was finished. He had gotten off the toilet a couple of times and I had sent him back when he began to speak to me with a variety of “d” sounds… “da, da, doe, doe, din, din, din, dan, dan, dan, den, done, done, done!” When he finally got the “done” out he jumped off the toilet and danced around the room in delight, repeating “done” over and over again. I danced with him for a time before I tucked him into bed. He closed his eyes and continued repeating the word “done” until he was fast sleep.

Life on our ranch was better but we weren’t allowed to keep it that way. The organization had a policy of sending people from the headquarters to monitor what we were doing and to teach us more about controlling those on the spectrum. They also had times when they gathered everyone together as a group, first as a celebration at headquarters and later on camping trips to a lake and up into the mountains. I also was brought down to headquarters on occasion to learn more about their expectations of me. We watched our residents go into regression every time one of these events happened.

However, these events did allow me to get to know everyone who was part of the organization in ways that I wouldn’t have, had I just stayed in the north and worked. There were 35 residents in the program while I was involved and each of them became dear to me in their own way. They were such a great example of the variety of experiences on this spectrum and the need to develop individualized programs based directly on the specific needs of each individual. But that wasn’t what was happening in this organization. Yes, each individual did have their own ‘program’ as such based directly on their unique behaviours and ability to function, but it was all focused on the psychologist’s concept of lack of control and therein a major problem.

I witnessed abuse every time I was at headquarters or at one of their events, which I am not going to go into detail, as it puts me into places in my memory I can’t bear to revisit. Every time this happened, I reported it to the psychologist who thanked me for my diligence and assured me that she would take care of it. At one point she even organized a meeting in which I was to confront those who I was complaining about. This seemed to only make things worse as the perpetrators grew even more extreme in their behavior when I was in their presence. It didn’t take long for me to realize that her words were empty and that she was as abusive as everyone else. If I had not developed relationships with the people, I was working with and seen the progress we were making, I likely would have quit. Deep within, I knew that I was on the right track even if she wasn’t.

When I phoned to report that A had spoken to me the decision was immediately made to move him from our ranch back to headquarters. I missed A and worried about what was happening to him. In many ways A had latched on to my heart in way that none of the others had, in spite of my deep love for all of them. A wore glasses. One of our goals, when working with him, was to keep the glasses clean enough so that he could see clearly through them. As soon as we cleaned them and put them back on his face, he would spit on his fingers and rub the spit all over the glass. I now realize that he was likely using the spit to cut down the amount of light entering his eyes, but it didn’t make any sense to me at the time.

I had to return to headquarters shortly after A was taken from us. I was in the dining room when he entered the building. He stopped short when he saw me, took off his glasses, polished them carefully on the corner of his shirt and put them on again. He stared at me for a couple of minutes and then came up to me and wrapped his arms around me. As I held him, I told him how sorry I was that he wasn’t living with us any longer and that it had nothing to do with me. I wanted him to live with us. He wouldn’t let me go. I think he would have been content to stand like that, with our arms around each other, forever.

Everything came to a head in the fall of that year. A family had opted to place a 4 year-old child on our ranch. Headquarters decided to send up one of their veteran workers to assess this little one and teach us how to work with him. This man was the absolute worst of the abusers. As soon as I was told what was going to happen, I started voicing my concerns, first to my supervisor and then directly to the psychologist herself. I spent about 12 hours on the phone that day trying to make someone listen to reason, to no avail. By the end of the day, I had been relieved of my contract and was told that there would be court orders issued to protect the organization from me. I was not to step foot on any of their holdings or approach anyone from the ranch while they were out in the public.

As you can imagine, I was in complete shock and had no idea what to do. I ached to go out to the ranch and explain the situation to ‘my guys’ as I knew they were missing me as much as I was missing them, but I didn’t dare. I couldn’t forget A’s arms holding me tight, not wanting to let me go. Was this how the others were feeling? I didn’t want to make things worse for those I worked with, so I obeyed the ‘court orders’ in spite of the fact I doubted they actually existed. In the midst of this, I was terrified of what was going to happen to the little one who was about to arrive on the ranch. What could I do to protect him?

It was at that point I came to the realization how well the organization protected itself from people like me. We never used anything but first names on the ranches and camping trips. There was no way for me to point fingers or accuse anyone of crimes because I didn’t know their names. I did contact the parents I was able to get in touch with, but they had already been warned that I would be calling and trying to get even with the organization for letting me go.

At that point I became determined to close down this organization, in spite of having no idea how to accomplish it. I went to the police and allowed them to document everything I had witnessed in the past 8 months, but they admitted that they couldn’t do much about it without having the names of those involved. It took days of interviewing to get it all on paper. I also went to social services and allowed them to audio tape everything that I said in hopes that it would make a difference, but it didn’t seem to. It appeared that my hands were tied.

In the midst of trying to share what I knew, I also realized that I would need to bring expertise on autism here, if I was to succeed with my mission. There were 35 individuals that I loved who would need someone, somewhere to look after them. Again, I didn’t have a clue where to start. It took a television show to guide me in the right direction.

In January of 1989 a movie was released that completely changed my life. I was at home, making supper, when the phone began to ring, and one friend after another told me that I needed to watch Oprah. I turned on the TV to find her interviewing Temple Grandin about autism, as an introduction to the movie Rainman. Oprah asked Temple to describe what it felt like to be a child with autism. This is how she responded:

"Now the reason that children withdraw is because of sensory problems. Loud noises just hurt my ears. When a loud noise goes off, I put my hands over my ears. It hurt. People touched me. It was like a tidal wave of stimulation. On an autistic child a scratchy petticoat will feel like sandpaper just scratching her raw. Her skin is so oversensitive, and my hearing-certain sounds will just blast through my ears. You're so overwhelmed by the defect in the sensory system that all you want to do is withdraw because it hurts. How can I be thinking of emotions when I'm just trying to protect myself from this terrible noise onslaught." (Temple Grandin, The Oprah Winfrey Show, 1989)

I was completely transfixed by what I was hearing for I realized that I knew something that the organization I worked for didn’t know. Autism wasn’t a problem with lack of control. It had something to do with how the individuals were responding to information coming in through their sensory system. Temple was clearly explaining many details I had written in my notes while I was working as a group home supervisor, especially about D. I had often driven home from work thinking that if I ever went back to university, I would want to focus on the impact of the sensory system in autism because of situations that had happened to D during the day. I finally had a direction to go in my search for a replacement for the organization.

I spent the next few months focused on reading everything that I could get my hands on regarding autism. We had a very excellent program in our local library that allowed me to order anything I needed from any library in the province and I used it to the nth degree, ordering books and articles and scanning their bibliographies to find more to order. Although my main focus was on personal accounts and the sensory system, I read anything and everything I could to develop as clear a picture as I possibly could keeping a careful list of everything that I read for future reference. At this point this list contains thousands of entries.

At one point, I took a trip the city to meet with the autism specialist who was employed by our government. I shared my excitement at hearing Temple speak and was shocked at her response.

“You have to be very careful listening to anything that Temple says. She is only saying what people have told her to say.”

A shudder ran through my body as she spoke, as I thought about the residents being accused of lying whenever they mentioned the abuse they were experiencing and/or witnessing on the ranches. Not being willing to listen appeared to be a consistent problem in this field. I was not going to let it stop me.

For the next few years, I poured all of my energy into learning everything I could about autism, by listening to those on the spectrum instead of the so called experts: scientists, educators, and even parents. I developed programs based on what I learned and went into homes, schools, day services programs and even institutions to teach what I had learned. I wrote books and spoke at conferences in hopes that I could open the door for these people I had grown to love. In time this led to my visit to Dr. Martin Luther King’s Center in Atlanta.

The years have flown swiftly by. Almost a quarter century has passed since I walked the streets of Atlanta with my friend. Over time my mission has grown, as I have come to the realization that it is not only those with autism we need to listen to, but everyone. We all have a story to share. A story that is unique to each of us and a gift for the rest of humanity. My current dream is that, not only do we create a world in which everyone is free to share their stories without censure, but that the rest of us make the effort to listen and respond. Together, I believe, we can heal the world.