Safety Issues... A Matter Of Life And Death!!!
It was well known that autistic children did not perceive danger the way normal children did. The best way for me to explain this in terms of how "safety issues" and the apparent inability to perceive danger as they relate to the autistic child's inability to understand the whole without first understanding the parts that made up that whole was by very concrete examples of what I saw in Zachary in terms of this issue. The fact was that "lack of flexibility" was also very much a life threatening issue for these children.
In July of 2000, I learned first hand just how dangerous a place the world truly was for the autistic child. I, like so many parents had to learn this the hard way. I did not fully understand the issues involved at the time, but, now, in looking back, this too all made perfect sense.
We were in Canada visiting family. The date was July 27th, 2000... my daughter Anika's 8th birthday. We had gone to my in-law's camp for the day. Many family members were to be there and we, too, wanted to be part of this family get together. I was weary of having Zachary near water, but, as I had always done in the past when he was near water, I would simply leave a lifejacket on him all day - just in case. The day went by quickly. It was soon almost 10:00 pm and we had yet to sing "Happy Birthday" to Anika and have some cake. As we prepared to do so, I made myself a quick cup of coffee. Zachary had been just next to me as I did this. I then put sparklers on Anika's cake, lit them and was walking toward the table with the cake when my sister-in-law said: “Where's Zachary? I’m sure he'd love to see the sparklers!”
I had just seen Zachary and as such, I was not particularly worried. But, wanting him to see the sparklers, a few of us started to look for him... within a minute, panic started to set in... he seemed nowhere to be found. Surely, he must just be in a quiet spot playing... I kept trying to reassure myself and to stay calm as we continued to look for him. This camp was fairly large, with several bedrooms and a basement. In no time at all "Where's Zachary?" was resounding throughout the camp. Everyone quickly started to look for him. Upon perceiving panic now setting in, my husband Frederick had rushed outside - just in case. I continued to look in the camp... thinking he "just had to be here"! It was approximately 10:00 pm.
Frederick quickly went up and down the shoreline, looking for any movement in the water. With the dark of the summer evening, he just barely made out something moving at the very end of the dock. Sure enough, it was Zachary - chest high in water, at the very end of the dock, facing away from shore and holding on to the dock with the very tips of the fingers to his left hand - with a very watered down diaper!
Had he taken just one more step, or lost his footing, or had we taken just a little longer to notice he was "missing", Zachary would have surely drowned.
The fact that he had made it to the end of the dock in such a short time had to mean that he had literally ran to the water once he snuck outside and went right in. This had all happened too fast and he had gone too far, too quickly, for him to have simply "slowly walked to the water and went in". I had just seen Zachary earlier when I had made my coffee... in total, probably 4 minutes had gone by since then. This had simply been "too close". I was a complete ball of nerves and needless to say, we decided to leave first thing in the morning. The dangers all about for an autistic child were just "too numerous" for my comfort.
Had Zachary made it to the nearby road, instead of the water, I knew he would have "walked the line"... he had often done this in the past when we went for walks. I now understood why! It was "an entity" – continuous “whole”... and he would have kept following it (either the side line or the center line - depending on which one he happened to see first). The nearby road had a 50 mile per hour limit... and with the dark, if Zachary was on the road, a car could have easily hit him. Had he gone through the woods in the back of the camp, he could have easily been lost also. As I had searched for him during those couple of minutes, all these things went through my mind... there were so many dangers for Zachary in a "normal environment".
I knew Zachary had serious issues with direction changes, but I did not understand them until after this near drowning incident. I understood that "normal order or normal direction was involved" but it would be much later still that I would truly come to understand why Zachary had so many issues with direction changes.
To Zachary, "normal direction" meant going forward... anything else did not make sense. Going left, right, backwards or sideways were things he did not truly understand - until directions were labeled as "left", "right", "backwards" or "sideways" - in everything - from car rides , to walks, to rewinding of videos ("going backwards"). The directions of "backwards" for example, went totally against "normal order" and until labeled, it was not understood as "an entity in and of itself".
For Zachary, there could have been and would have been no going back to shore...his need for "normal order", literally, "forced him to keep going forward", away from shore! Going "backwards" was something he did not understand, it went against "normal order" , and thus, he would not have "been able to come back to shore" on his own! I had not yet labeled for him the concept of "going back" and so, he did not understand it. All his mind could do was go forward. I had not labeled for him the concept of "danger", not specifically worked on the concept of "be careful" because, at the time, I did not myself understand the autistic mind. That would only come much later. I had not outlined for him the "steps to assess danger"... all things so critical for the autistic child.
So many things we had taken for granted, we had assumed he understood – were gone and with their disappearance, an incredible rigidity and inflexibility had set in. So many concepts I had made use of – like his name – things I assumed he “still knew” were gone! Had he actually lost memory or had I simply assumed he knew these things but they had never actually imprinted in his brain? It just did not make any sense! I knew Zachary had known some of these things previously! I knew Zachary had once made proper use of stairs… but that had disappeared! Why? Why had so many things simply “disappeared” – things I knew he knew at one time!
When I finally did understand, at least partially, Zachary's issues with "direction changes" I worked with him on this issue specifically. When I first began to understand these issues, I thought they were simply attributable to his "fanatic need for order". It was only later that I would truly understand this issue for what it was - the inability to properly process a subset of the ordering function - that function within the brain that dealt specifically with the processing of "parts" to understand the "whole". Still, this near drowning had clearly shown me that for some reason, Zachary had issues with direction changes. I therefore worked specifically with him on this issue... walking backwards, left, right, sideways... these were all things we would practice on our many walks to the park. Once labeled, and identified as separate "entities in and of themselves", these "other directions" were now "ok". They were no longer a problem for Zachary - once labeled!
This issue was a little harder to understand in terms of "partials", but if you think about it, the concept of "direction" was an entity in and of itself. "Normal direction" was going forward and as such, any change in direction would be perceived as a new "part" to the whole concept of "direction"... a new "part" that until defined and explained, made no sense, in my opinion, to the autistic mind! All these other directions (left, right, sideways, backwards) brought an unknown dimension or "part" to the concept of "direction", and as such, they were not tolerated. Although a little more "abstract" in nature, the issue of problems with changes in direction, could be explained based on the inability to process partiality... the parts to the whole... in this case, direction.
Had Zachary made it to the nearby highway when he snuck out of camp that summer night, normal order, or normal direction would have meant "walking the line"... and following that entity. That could have cost him his life as could have the fact that he most likely would not have perceived "cars" as parts to the whole - the street and as such, he would not have "worried about them" but rather would have chose to "ignore them" since he most likely would have not understood that cars were "parts" of the street. Speed and the physics of a moving object were also things Zachary did not understand... and as such, they too, would have been ignored and not seen as part of the whole equation of the inherent "danger" of a street!
On another occasion, almost a year after the "near drowning", Zachary once ran right in front of an oncoming car in our front yard while we were raking leaves. He was playing quietly... and before I knew it, he was off and running down a small hill, into the street and straight into the path of an oncoming car. By this time, we had moved and lived on a quiet street in the Upper Peninsula of MI. There were only four houses on our street. It was a very quiet street but every once in a while, a car went by just a little too fast for my comfort. One neighbor, in particular bothered me in his driving habits. It was this very neighbor in front of whose car Zachary ran. Luckily the driver saw him and was able to stop in time... but, again, this had been too close... within a month, we had put up a chain link fence, 6 feet high, surrounding almost an acre for Zachary. We also installed safety latches 6 feet up so that he could not possibly get out of the yard on his own. This fence had cost us over $5,000.00, but it had been worth every penny! We also cut all the brush in this "compound" in order to be easily able to scan the entire yard with just one glance. I could now have a little more peace of mind when Zachary was outside. Still, Zachary was always with someone even in "his compound". :o)
From that incident, even at this late age (Zachary was almost 4 at the time) cars on the street, like so many other "parts" in the environment, were not properly perceived as a danger. They were parts (cars) to the whole (the street) and if not properly perceived, and recognized as entities in and of themselves, and identified or labeled as objects of "danger", then the autistic child, in my opinion, would continue to have no fear of them. Cars had to somehow be identified as part of the whole. The autistic child had to be made to understand that "streets were for cars - not people", "that streets and cars went together", that "cars were very dangerous" and that "you do not go in front of or in back of cars", that "you stay away from cars".
In October of 2001, I was fortunate enough to encounter something on the road... a squished pumpkin. :o) It had obviously fallen off a truck and either broken on impact or been hit by a passing car. Luckily, Zachary was in the car with me at the time. The "squished pumpkin" was very close to the intersection at which we had stopped for a red light... and it was in Zachary's direct line of sight so he saw it clearly. I made it a point to show Zachary the "squished pumpkin" and explained to him that if he went in the street, he too, would be "squished"... just like that pumpkin. That seemed to help a little to solidify the concept of the danger of a street. Within no time at all, I noticed Zachary showing a little more fear of cars. My brother-in-law had told me that in order to teach his autistic son the danger of cars, he had shown him a dead skunk on the road and said: “See what happens if you walk in front of a car?”. He believed that was what had truly solidified the concept that cars were dangerous for his son!
Zachary still had a hard time looking both ways before crossing the street in spite of the fact that I had practiced that numerous times with him. Parts to the whole that could or could not be there, like cars on a street, were simply not perceived as belonging there and as such were not feared! This was especially true of all things that involved motion!
The following summer, in July of 2002, we faced yet another dangerous situation for Zachary... this time, it was on my in-law's beef farm. We had taken both our children with us to do some work in a shed just next to a huge holding and feeding area for cattle. Most of the cattle were out to pasture and I had not noticed the one bull in the holding pen. Luckily, having been raised on a farm, my husband Frederick had noticed it right away... and he also noticed right away when Zachary headed straight for the bull’s pen. He started walking down the "shoot" and had that door been opened to the bull pen or had he been able to open the latch, without a question, he would have gone in... the "shoot" leading to the pen was part of the whole (the pen), the bull inside the pen, however, was not... and as such, Zachary did not perceive it as a part to the whole... a very dangerous part... and as such, the "danger" was not perceived. The bull itself would have had to be labeled as "a bull" and then the label of "bulls are dangerous - stay away" would have needed to follow.
Life with an autistic child was stressful indeed! Parents, in my opinion, could simply never let their guard down, in any situation.
The autistic child, in my opinion, was in constant danger in his environment... be that his home environment or any other. True, the home environment was more familiar, but it too was dangerous. I truly came to understand that the autistic child had no concept of what was "a little dangerous" or "very dangerous" and until taught the difference - he would treat both as equals. To the autistic child, getting onto a stack of bins in a closet was no more dangerous than walking out into the path of an oncoming car or bull, nor in my opinion, did the child perceive these situations as any more dangerous than say climbing onto the couch! Autistic children, in my opinion, honestly could not perceive or differentiate levels of danger... whether that danger was climbing on a table or a chair or walking out into traffic. To the autistic child, there was no difference in these activities... they consisted simply of "moving about" of "going where he wanted to go"... and nothing more... until taught otherwise!
Zachary was now somewhat "more aware" of danger, but, I knew this was still a huge area for him since he still did not remember to look both ways before crossing the street... something we had practiced on numerous occasions while walking. I had also noticed something else in Zachary that troubled me when it came to safety...
Recently, I had found Zachary in my bedroom closet. He had climbed onto two plastic bins and was unable to get back down by himself. He was holding onto shelves high up in my closet with his little hands. We pretty well knew that if Zachary was "missing" for more than two minutes, even in the house, we had to go looking for him - just in case he was "in trouble". When I opened the closet door, he turned and looked my way, and in a very, very soft voice said: "help"...but, he did not know to yell for help when he needed - he had waited for me to get there rather than yell for help as soon as he needed it! Another thing I would have to work on!
Because the autistic child could not properly perceive danger, in my opinion, these children had a tendency to get into "more of it". Their curiosity worked just fine... and thus, they were easily led to investigate things... even dangerous things - and too often, they were "in trouble" before even realizing something was wrong - if they could even realize that. I believed they actually needed to be taught "what constituted danger"! And, herein was a very difficult task. How do you even begin to teach an autistic child the multitude of situations that could "lead to a dangerous situation"? What generalizations could be made use of from one situation to another? These were indeed difficult issues I myself am still dealing with.
What was the answer to this very serious issue if you examined the issue of "danger" in terms of "partiality"? I was not sure there was "one answer" and as such, I believed parents needed to err on the cautious side and assume that their children were in constant need of supervision - at least until the child demonstrated a very concrete understanding of danger in many, many situations. Since Zachary had snuck out once, I feared he would do so again… and so, as with so many issues, when it came to safety, I was very conservative indeed.
I installed deadbolts on all doors very, very high up so that Zachary could not possibly reach them (6 inches from the top of the door would be where I would put them today since, after two years, Zachary was already getting to the point of reaching those I had already installed)… and, I put in a 6 foot chain link fence in our backyard, with safety latches close to 6 feet up, to further protect him when he was outside… so that he could not “escape” on his own. To leave our yard, he had to be “left out” by someone else. Zachary was really never alone outside, even within “his compound”. If he had no concept of danger, that meant he also would not perceive danger in say, putting a rock in his mouth – a possible chocking hazard – and as such, he was constantly watched (even though putting things in his mouth was something he rarely did)!
The autistic child, in my opinion, knew no danger and could express no heightened fear in a dangerous situation - until he had been taught what it was like to "fear a little" or "fear a lot". He then needed to be taught the appropriate response (i.e., yell for help) if the situation was one of "fear a lot".
Safety issues such as these, I believed, had to be repeated/taught in multiple ways, in multiple situations to make the child understand various aspects of safety. The key was in helping the child generalize the concept of "what was dangerous". Yet, at this point in time, at least for Zachary, I feared issues of safety were very situation specific.
In spite of repeated walks, going constantly over the need to "look both ways before crossing the street" for example, for some reason, Zachary was still not seeing the need to do this. I was careful to make it a point to stop at street corners and say: "look both ways", but he still "did not really get it". In my section on Teaching Language, under the "ordering language" section, I had mentioned how on one occasion, as we had gone on an errand, and crossed the street one day, I had made it a point to show Zachary the "Walk" and "Don’t Walk" signs. He had repeated: "Don’t Walk" at the time since that was the "flashing sign" as we stood on the street corner. At the end of the day, before he went to bed, Zachary started saying: "Walk... Don’t Walk"... and repeating that over and over again. He was "ordering" what he had learned during the day... and in this instance, understanding this concept could literally save his life. It was at that time that I truly understood the importance of ordering language… it would be much later that I would understand the importance of accurate and complete “reference communication” – especially as it related to issues of safety!
Now, in focusing specifically on "Safety Issues", I could not help but wonder if Zachary's difficulty in "looking both ways" before crossing the street was somehow related to the lack of "Walk and Don’t Walk" signs. After all, he had clearly "ordered" his world in terms of "Walk and Don’t Walk" on the day he had seen those signs. Did he now assume that all streets should have a "Walk or Don’t Walk" signs and that if none existed, it was ok to keep going? In putting all this together, I was now starting to think that this was indeed the case.
Much as language, in my opinion, was "tucked away" for future reference (reference communication as I called it), I suspected issues such as "Walk and Don’t Walk" were tucked away for future reference too... and that if "no reference" or “incomplete references” existed from which to "draw information", the autistic child was left without a "proper response" to the situation at hand... and in a dangerous situation, this could make for a deadly omission or inaccuracy!
Incomplete or inaccurate “reference communication” indeed made for a very dangerous situation. If the “past reference” was incomplete in terms of what was considered a “safe situation” for walking across the street, there was no doubt in my mind that Zachary would walk across the street into the path of an oncoming car. I was certain this would also be true if I simply said “walk” – that based on that past reference and association to “proceed across the street” upon seeing or even hearing “walk” that the “word alone” would be enough to make Zachary move forward… without looking both ways to ensure it was safe to do so!
I was now convinced that this was indeed a key to teaching an autistic child about safety... that in order to do so, the child had to be provided with appropriate "references to draw from" for future use. If this theory was correct, this made for a very difficult situation for the parents of autistic children. How could you provide the necessary "reference points" in terms of what to do in specific dangerous situations? I believed I could make use of equations much as I taught synonyms. For example, saying: “car moving = don’t walk” or “street corner = don’t walk”, or “no cars = walk” could help, but at this point, this was all too new – even for me – and as such, I had to continue to be very, very conservative when it came to Zachary’s understanding of safety issues! I had to continue to assume he had no concept of such things… until he could slowly prove otherwise!
I would have to do a great deal more in this area before I felt comfortable that Zachary could indeed even begin to "understand" danger! I, personally, would have to assume Zachary had NO concept of danger - IN ANYTHING - until he showed me otherwise in everyday situations! Videos, labels and "reference points" perhaps via books were all I had to work with. I could make use of labels and such, but, in this area, I truly felt the more real life the reference points, the better - and for our family, that would mean many videos on safety! I believed there existed a great need for a safety video that made use of colors, motion, sound, and visuals – geared specifically to autistic children! The realization of just "how dangerous" daily life could be for my child had now truly set in very concretely! :o(
I knew of no place to turn to for help with this very serious issue! This was one of those moments at which you felt very alone in life. At least, now, I had a much greater awareness of the issue and I could begin to work on it.
It had taken me such a long time to teach Zachary to "look both ways" - I had worked so hard on simply "looking both ways" and gotten nowhere. That, alone should have tipped me off to the fact that what I was doing was not working and that I needed to try something else. Zachary, in the past had learned a great deal from children's videos and I hope the same could be true for "safety" as well and that, eventually, safety videos would provide that all necessary "reference point" for my autistic child!
This was indeed a very serious issue for parents and society as a whole. How could one possibly teach a young child "issues of safety" when that child could not first understand the "parts" that made up the "whole"... in this case, the dangerous situation - and the child had no "reference points" or “incomplete reference points” to draw on in terms of "what to do in certain situations"?
To further solidify this issue of “incomplete reference communication”, I wanted to provide a final example of “how Zachary’s mind worked”. Zachary had “plastic shapes” I used in doing exercises with him. There were about 250 pieces in this “bucket” of shapes (see Exercises I Do At Home section). I had picked these up off the floor so often because Zachary loved to “tip the bucket over” (it was about ¾ full when all the shapes were in it) that I decided to put that bucket of shapes above my kitchen cabinets – up high, where Zachary could not get to them. Recently, when he wanted to play with those shapes, he said: “shapes, please”. His sister was next to me. I said: “Zachary, ask Anika to give you those shapes… say… Anika, give me the shapes, please.” Zachary repeated the “Anika, give me the shapes, please” and his sister gave them to him. After he was done playing with the shapes, I then put them back where they belonged… once again, out of his reach. The next day, Zachary wanted the shapes again – only this time, his sister was not in the kitchen – his father was! When Zachary said: “shapes, please”, I said, “Zachary, you have to ask dad for the shapes”. To my utter surprise, he said: “Anika, give me the shapes, please”. He had drawn on his prior “past reference” on how to ask for the shapes… and in doing so, used his sister’s name to ask for the shapes… even though his sister was not in the room! Absolutely incredible! I then corrected him and told him he had to ask “daddy” for the shapes because “Anika” was not in the room. The following day, again, Zachary had wanted to play with these plastic shapes. This time, when he said: “shapes, please”, and I told him he had to “ask for them”, he said: “Mom, can I have the shapes, please”. I was the only person in the room… and this time, he had learned that the person you had to get to “do something” actually had to be there to do it. :o)
This, example, truly showed me the workings of the autistic brain and how incomplete or inaccurate “references” to draw from, could literally cost my son his life in a dangerous situation – and how a past memory – an ingrained reference - seemed to override actual incoming sensory input! It was then that I truly came to see that Zachary’s life consisted not only of “reference communication”, but indeed, of “reference livingã” - or “living via referenceã” - in everything! A very dangerous way to live!
Indeed, I now understood that echolalia and “ordering languageã” or “reference languageã” were just tools by the autistic child used to “build references”. There were so many topics on "safety" that had to be addressed: fire, construction sites, traffic, animals, anything related to issues of danger and motion, etc. It would indeed be a challenge to find good videos to address so many areas... videos, that, in my opinion, needed to include motion, visuals, sounds, smells (i.e, for dangerous substances), color, etc.
I encouraged all parents to submit " recommended safety videos" via my website, http://www.autismhelpforyou.com - videos that, based on the above, could be used for teaching certain concepts as they related to safety. I would post these “suggested videos” under my safety link for all parents. But, truly, I believed this area was so huge, that what was needed was a video geared specifically to the autistic! As with everything, in my opinion, for the autistic child, understanding "safety" would could eventually come “over time” as the child came to understand more about his environment and as he was provided with more coping mechanisms (i.e., labels) to more fully understand that environment and its inherent dangers, however, I feared that for these children, time was not on their side when it came to issues of safety! This indeed was truly an immediate issue of life and death for the autistic child!
This inability to understand the parts to the whole - when combined with a dangerous situation - and the lack of past information or incomplete information to "draw from" indeed, in my opinion, made for a deadly combination! The inability to perceive danger - another issue explained, yet again, by the inability of the autistic child to properly process the parts to a whole and the inability to integrate those parts and assess them in terms of potential danger in order to obtain the “appropriate response” given the situation!