More On Safety Issues…
It was a well-known fact that children with autism seemed to have “no fear of danger”. In so many cases, including Zachary’s, these children simply did not have “an understanding of danger”. In my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism!, I recalled an experience and very close call my family had with Zachary in this regard – it had very nearly cost Zachary his life. On another occasion, out of the blue, Zachary had run out in front of a car. He had to be watched constantly. Not only was this very exhausting, but realistically, it was virtually impossible. The second my back was turned Zachary could attempt to escape and possibly come into harm’s way.
Our efforts to keep Zachary safe had been a very difficult and exhausting battle for our family. We had installed locks very high on our doors so that he could not reach them. Our backyard now consisted of what we jokingly referred to as “the compound”. We had erected a six-foot chain link fence with automatic gate latches that were located six feet high. Thus, in order to “escape” from the compound, Zachary would need to be able to push down on a mechanism that was located at each gate and positioned six feet above the ground – something he still could not accomplish.
We had also bought an Australian shepherd dog – known to be among the best watchdogs for children. These dogs had a natural “herding” instinct and if they had no herd to watch, the members of the family became “their herd” and they became very protective of them. Indeed, while at a park one day, when we had only recently purchased our dog – Patches – Zachary had broken away from me and started to run toward the lake. There was quite a distance from where we were to the lake, but, as soon as Patches had seen Zachary “break away”, he instinctively went after Zachary, gently grabbed him by the shirt sleeve, and pulled Zachary down to the ground as he then proceeded to lay on top of him. This entire scene had happened no more than ten feet from me. Patches had only been three or four months old at the time – Zachary had been approximately three years old. As I watched the dog do this, I thought to myself: “this was the dog for me”! If ever the children were outside, the dog stayed right by them – following them wherever they went in the yard, laying down next to them as they played in the sandbox and getting up and following them wherever they went.
The dog and “the compound” had brought our family the ability to relax a little and while we remained in “the compound” there was a great sense of peace. Yet, I knew it was a “false peace”. Zachary’s life would not be one consisting of “compounds” and dogs – he had to be able to eventually come to understand danger and know “how to react” appropriately – on his own.
In my second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!, I had come to see that Zachary’s “reference living” truly impacted him in a very dangerous way when it came to matters of safety – and I very much suspected this was the case for other children with autism as well. I had written an entire chapter on matters of “safety” an another on issues of “motion” in this second book and strongly encouraged all families of children with autism to read these chapters in my second book as they covered a great deal more on these topics than I would provide below. Both books I had previously written were available in full – for free – to families of all persons afflicted by autism, schizophrenia and/or Alzheimer’s – and were available for downloading by families on my website at www.autismhelpforyou.com.
Below, were but a few of the words I had written in this second book with regard to matters of safety and motion:
“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!…
With motion, it was as if that “normal instinct” as it related to danger… that connection we all instinctively made when we perceived motion – to assess a moving object in terms of potential danger – was simply not there in the autistic child!…
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! [end of quotes from Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!]
The above examples were but a very few I had provided for readers in my second book. There were many more and I strongly encouraged all families to read these two chapters especially – safety and motion – because, clearly, they would help many families understand the issues they faced in terms of safety – very critical issues indeed.
I had no doubt that “past references” could certainly be modified to include more accurate information, but, I knew I still would be very, very cautious in matters of safety and assume Zachary still did not understand them until he consistently could show me otherwise – in multiple situations.
When I considered the fact that I knew Zachary lived “via reference” and then combined that with the fact that children with autism were known to have impaired motion perception, peripheral perception, spatial perception and sight/sound sensitivities, I truly came to understand why safety issues (such as seeing a car coming) were so difficult to overcome for these children.
When you combined that with the fact that various functions were located within differing parts of the brain that seemed to be limited in terms of communication among lobes, safety issues become a huge concern indeed for all parents of those with autism. Activity in response to one's environment was located in the frontal lobe, auditory processing in the temporal lobe, auditory relays in the midbrain, spatial processing, visual attention and goal directed movement in the parietal lobe, visual processing in the occipital lobe. Damage to the frontal lobe resulted in lack of flexibility and/or spontaneity and inability to focus. Damage to the temporal lobe resulted in selective attention in terms of sight and sound and difficulty understanding the spoken word. Damage to the parietal lobe resulted in the inability to attend to more than one object (i.e., cars), lack of awareness of body parts and/or surroundings, difficulty in focusing visual attention, and difficulty with spatial processing. Damage to the occipital lobe resulted in difficulty identifying colors, in locating objects in one's environment, and difficulty with objects in motion.
Given the basal ganglia appeared to process a conscious task before a subconscious task (i.e., moving instinctively away from danger), this certainly complicated matters.
There was no denying, that without proper communication among the lobes and other parts of the brain, safety issues were paramount - especially in children with autism who had very limited exposure to “learned tasks” involving these issues. That issue – lack of proper communication – in and of itself was huge, and when combined with the fact that these children lived “via reference”, the consequences could be disastrous – as indeed they had been for so many children with autism!
Unfortunately, many parents could assume their children could "see" or "perceive" certain things... when clearly, those skills were seriously impacted in the child with autism. It had taken me over two years to realize some of these specific impairments in my own son... and to understand the many challenges he now faced in these areas.
Recently, I discovered the following site that offers materials relating to street and fire safety. Safety games on this site involved playing in the yard, walking on the sidewalk, crossing the street, etc. I would caution parents though that as this was applied to real life, given I believed children with autism lived by reference there was a need to ensure children were shown what to do in the same situation when there was no sidewalk to walk on, and no street light with a "walk" or "don't walk" sign, etc. This particular website, http://www.do2learn.com/, had been created by persons with family members who had autism.
These may be a way to help children with autism understand these issues. My concern here would be that parents made sure the child did not see this as "a game" but rather as something that was serious and needed to be understood and applied to “real life” – outside! As such, I personally would work on such matters and carefully monitor Zachary’s reaction/interpretation of what was going on as he worked on such programs to help ensure the proper "message" came through. Using equations like car = danger = watch out = be careful, to build word associations was critical. Given word associations and motor planning and execution were co-located in the frontal lobe this appeared to be the best option in at least starting to address some of these issues and then “bridging” over to other parts of the brain by using categorizations, visual perception in the temporal lobe to then hopefully bridge over to visual attention, etc. in other parts of the brain.
It took a little while to download this via a phone line so the site owners suggested downloading at night to have everything downloaded by morning. This appeared to be a good place “to start” in regard to some of these issues.
Matters relating to safety still weighed very heavily on my mind. Zachary was slowly making progress, but, I had no comfort whatsoever that he was even close to being able to understand danger – and in my opinion – this was an assumption all parents should be making given that subconscious tasks took a back seat to conscious tasks.
I thought about this issue of safety a great deal and as I constantly observed Zachary, I wondered why he seemed to do better in certain situations than others.
Zachary had almost every software program ever made for kids by Jump Start and The Learning Company, and several from Broderbund, and other companies, as well. I never ceased to be amazed at how quickly he could grasp what needed to be done in these programs. Clearly, he could follow instructions given on the computer.
Yet, to give Zachary verbal instructions, such as “look both ways before you cross the street” or write the letter "A" on paper, for example, just never seemed to work well in comparison to how well Zachary did on the computer. I knew Zachary knew how to spell countless words – out loud - but when it came to actually writing the words that was still very much a challenge I needed to help him with.
Zachary could make all his letters – not perfectly, but he was learning rather quickly. He had only really started to be able to hold a pencil in the last two months or so. He could make letters – but, for a very long time, he just did not know to put them in the correct order on the paper. For example, to write his name, even though he could easily spell it, and knew what letter to write first, second, third, etc., if he tried to write his name – for quite a while - the letters ended up all over the page, in various sizes, some one on top of the other, and pretty well all over the place. Zachary only very recently had learned to perform this simple task with much more accuracy. He could finally write the letters in their proper order although “nice letters, size and spacing” were still an issue.
I wondered why it had been that instructions on the computer, in almost everything, appeared so much easier for Zachary to follow and why my verbal instructions seemed so much more difficult to follow.
On the computer, Zachary could "take in" instructions and follow them quite easily - even when the program was "talking" fairly fast. As I had written this particular section of this book, Zachary had been working on a 2nd grade program (he was only five years old) and as he worked on his computer (just next to mine) and tried to put a gadget together based on a propulsion system to get a functioning apparatus that would throw an object into a specific area. He seemed to be able to follow the instructions quite well.
To me, that indicated that auditory processing (in the temporal lobe) seemed to be working fairly well in conjunction with the skills found in the parietal lobe (spatial processing, visual attention, touch perception, manipulation of objects, goal directed movement, 3-D dimension identification). Again, as I stated earlier, it appeared that the more active the overall brain, the better overall functioning there appeared to be. The use of a computer – obviously - involved most major parts of the brain.
If, however, I looked at auditory processing (temporal lobe) and goal directed movement (parietal lobe) alone, for example, asking Zachary to write his name on a piece of paper, that was a much more difficult task for him. He clearly understood what I was asking (understanding language was in the temporal lobe), recognized my face and voice (also functions in temporal lobe) as I gave him those instructions, but yet, this simple task of writing his name (a goal) with a pencil (touch and object manipulation were in the parietal lobe) was quite difficult to do "correctly".
The other very interesting thing in all of this was the fact that Zachary could easily and accurately perceive motion while playing on the computer. He knew to “avoid things” when he needed to as he played on the computer. Yet, he had great difficulty in "seeing" a moving car and reacting appropriately to that car when we went walking! Why was it that he could avoid a moving object in his computer games and avoid being somehow "terminated" yet he was unable to properly perceive motion in real life - at least when it came to "seeing" a car?
I knew that with "cars", visual input took a back seat to a past memory as I explained in my second book. But, how was it that "memory" appeared to be more flexible with computer games than "real life". With a computer game, Zachary appeared to "learn" the lesson when it came to motion and he adjusted accordingly to variations of the same situation. That - clearly - was not the case when it came to cars and the real world!
As I searched for the answer to this question and once again pulled out my 3-page brain overview, again, the answer appeared to be there, before me - once more!
Damage to the occipital lobe also resulted in difficulty in identifying objects in one's environment. The basal ganglia, a part of the brain also known to be impacted in autism, schizophrenia and Alzheimer’s, was involved in determining the “order” of conscious verses subconscious tasks. In other words, according to research, if two tasks presented themselves simultaneously, one conscious, the other subconscious, the conscious would “win out” and be the one performed first! In matters relating to safety, in my opinion, the consequences of that could be – disastrous!
This was a very difficult issue for me, personally. I had literally spent months trying to teach Zachary how to safely cross the street and he still was unable to do so. I worked on this issue with him pretty well every time we went for a walk. I truly feared for his safety in this area!
I decided to do a small experiment with Zachary. First, I explained the difference between "moving" and "standing still". It had occurred to me that I had always just "assumed" he knew the difference, but really, I had never actually labeled "moving verses still" for him. So, I did that first to give him that critical label to make him understand the concept of “motion”.
I would move and say: "I'm moving".... when I'd stop, I'd say, "I'm standing still". I did this little experiment over two days. The first day, I walked about the kitchen/living-room area, as I asked Zachary, "Am I moving or still?". He had a great deal of difficulty answering correctly... actually, I truly felt he was just guessing. I worked with him for about fifteen minutes on this exercise.
A few days later, I tried again. I started by sitting in a chair, and moved my arms asking Zachary, "Are my arms moving or still"? He could give me the correct response - so that was encouraging. I then got up and walked around the room asking him the same thing as I had done previously. This time, he was much better at giving me the correct answer. He now had a “reference” as to what “moving” and “still” meant.
I also tried to see if he could differentiate “moving” and “still” - with cars. I found he still had difficulty with that. The fact that cars were first far away may have impacted his perception in this area. Perhaps he could not distinguish whether or not they were “still” or “moving” until they were much closer. I suspected that might have something to do with it. But, as I continued to work with Zachary on issues of safety, I practiced providing “different labels” for him – “different references” to draw from. I practiced the assessment of danger using different senses to see if that made a difference.
In addition, when I saw moving cars, I was sure to tell Zachary that "moving = danger". I always used the "equal" to put concepts across as I had found his understanding of mathematical equations was better than "just sentences". Understanding of language was located in the temporal lobe along with categorization of objects and, as such, by using mathematical concepts, I believed the "lesson" was better learned given I believed functions co-located in a specific part of the brain were perhaps much more inter-related than we could ever have imagined.
Difficulty in perceiving objects in motion and difficulty in locating objects were signs of occipital lobe damage – that part of the brain responsible for visual processing.
Yet, there was some visual perception in the temporal lobe along with the understanding of language and as such, the key to overcoming these issues would perhaps be in making use of visual perception in the temporal lobe. Visual perception in the temporal lobe seemed to be associated with matters involving the recognition of faces, places and body parts.
That did not give me a lot of confidence in terms of being able to use “visual perception” to help Zachary with issues of “safety” when it came to things like oncoming cars. In my opinion, that meant I would have to use something else – and in my opinion that “something else” had to be the function of “categorization in association with memory acquisition” – again both in the temporal lobe! Categorization, truly, was absolutely critical to the child with autism – in almost everything.
Auditory processing also resided in the temporal lobe. Yet, auditory relays were in the midbrain. Thus, I did not know if teaching safety based on "hearing" would work. In my opinion, the sense of “hearing” was clearly not enough to go on. Many cars were so “silent” today that they were often “there” before you even realized it.
This was still very much an issue to work on at this point... but, at least now, Zachary understood the "label" or difference between "moving and still" - of that, I was sure. I continued to observe Zachary for signs of “something” that could be of help in matters of safety.
Zachary had a computer program (1st grade by Jump Start) that he liked to play. In it, there was a basket of golden eggs that could be broken. Something came out of the egg when it was broken... a white flying horse making a horse sound, a duck making a duck sound as it too flew away... and the interesting one... a black horse... only this one did not make the sound of a horse, instead, it sounded like a bat flying away as the horse’s wings flapped in the air.
The black horse made the sound of a bat…
As he played, I asked Zachary “what that was”. Amazingly, even though the animal looked like a horse, because it sounded like a bat, Zachary said that it was – a bat! Thus, sound clearly had taken precedence over sight.
This certainly was interesting. Auditory processing and the ability to distinguish between truth and a lie were co-located in the temporal lobe. The only “visual perception” in the temporal lobe had to do with the identification of faces, places, and body parts.
This certainly provided an interesting twist to the old saying: “I’ll believe it when I see it”. Clearly, this indicated that “seeing” was not what was most important – hearing was – at least in Zachary. If I were correct, that also meant that a recognized voice would be most believed as “true”. This certainly explained why a family member – a familiar face and voice - would be more easily trusted than a stranger given that face/voice recognition and ability to distinguish between truth and a lie were co-located in the temporal lobe along with the understanding of language, memory acquisition, and auditory processing.
Categorization of objects and auditory processing were co-located in the temporal lobe while sight was processed primarily in the occipital lobe - I now understood why Zachary had answered this way.
Although I did not specifically mention this in my second book other than a brief line or two in the brain overview table, I knew Zachary's visual processing was clearly impacted. I was certain Zachary had occipital lobe damage also. If you looked at the table for the brain overview, a couple of things were listed under the "damage to" section for the occipital lobe that were clearly evident in Zachary. Damage to the occipital lobe could result in the difficulty with objects in motion as well as with hallucinations. I did not believe Zachary suffered from hallucinations since he had been placed on enzymes to help with the breakdown of casein and gluten, but I knew he still very much had issues with the perception of motion. As such, that part of the occipital lobe was definitely impacted.
As I had explained in my second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!, I had worked very hard with Zachary on the issue of “street safety”. Yet, I could be on a street corner and ask Zachary ten times if a car was coming and – even if there was none - he would state that there was a car coming. Sensory input in the form of visual input appeared to be completely irrelevant as a past memory was drawn on to give “an answer” – an answer that may or may not be correct – and in this situation – that complete disregard for incoming visual input – could literally – cost Zachary his life!
I tried many different things when it came to issues of “safety” with Zachary. In my opinion, the key to getting Zachary to overcome these issues had to be the use of categorization, understanding of language, memory acquisition and auditory processing – all co-located in the temporal lobe – in conjunction with word associations and motor activities, planning and execution and memory as it related to habit formation in terms of motor functions – located in the frontal lobe.
In other words, I would have to use word associations – such as moving car = danger = stay on side of road or on the grass, or car with person in it = danger = be careful = could back up, and use that categorization/association to help generate the appropriate motions. Each time a car would come, I would not only verbally tell this to Zachary, I would also show him the appropriate motor response – to stay on the side of the road or on the grass – and do this repeatedly. I also used my arms as I stopped at each intersection and looked with him each way. As I asked “Is the car moving?”, “Is the car coming?” or “Is the car still?” I would use my arms to motion coming as I extended my arm out in the direction in which we were looking and then brought my arm back in toward my chest to indicate “coming”. Zachary had always loved anything I did that involved motion and as such, I tried to use “motions” as much as possible – especially given motion and word associations were co-located in the frontal lobe.
I also tried different references in terms of using different senses. I would ask Zachary if he could “smell” a car coming since smell and motor activity were co-located in the frontal lobe. I would ask him if he could “hear” a car coming. But, in everything – I always provided word associations and never worked with one sense alone. In my opinion, providing as many variations as possible in terms of “danger equations” was critical to providing the references Zachary would need. I could then work on expanding those references to include more and more situations.
Although saying “do you smell a car coming” sounded ridiculous – because you could not really – at least not for the most part – “smell” a car coming – this did make Zachary take a deep breath, and a deep breath was - hopefully – associated with “being outside” and I hoped somehow – that “smell – outside – cars” association could somehow also be formed to help with issues of safety. I literally tried everything I could think of – and still – this was such a difficult area for Zachary.
I had no confidence whatsoever that he could accurately perceive danger and know to move away from it.
I could incorporate train tracks and say “trains and train tracks = danger = stay away”. I tried to always use the words “danger = stay away = be careful = stay on the side of the road or on the grass”.
Note that I was also very careful to make sure Zachary knew to “always look for another coming car” – not just “Is a car coming?”. After confirming that one car had gone by, as we stayed on the side of the road of the grass, I always made sure that we always looked for “another” car, and “another car” and so on, before crossing the street since Zachary had to know that “any” car coming was a “danger”.
I also had to make sure his references included all types of vehicles… not only cars. I made sure I included things like: “Is a van coming? Is a bus coming? Is a truck coming? Is a motorcycle coming? Is something coming down the road?” To use only “car” would provide an inaccurate and incomplete reference for Zachary. All possibilities – all types of vehicles – ambulances, fire trucks, police cars, dump trucks, garbage trucks, all vehicles had to be included in the lesson.
I also made sure I defined “where” to stop and “look” – the intersection. I defined it as a place where two or more streets touch each other. In everything, I tried to provide labels, word associations and categorizations and the use of motions and senses to solidify the concepts in terms of teaching safety.
I also practiced crossing in places “other than intersections” showing Zachary to “stop at the pavement” or “on the side of the street” because some streets had no pavement – just gravel – and he had to understand that, too!
Recently, I had noticed Zachary making progress in this area of understanding safety issues, but, I still knew – in this area – he had a long way to go before I had any comfort that he could react appropriately on his own!
Closely associated with issues of safety were issues of “wandering off”. Based on the fact that peripheral vision was known to be impacted in autism, schizophrenia and Alzheimer’s, and also based on the fact that often, persons with autism or Alzheimer’s could read but not understand the written word, issues with “wandering off” also now made a great deal more sense. If peripheral vision were impacted chances would be very good that one would perhaps not notice - “place markers”. Visual perception as it related to faces, places and body parts was located in the temporal lobe – an area known to be very much impacted in these disorders. In addition, the reading of signs would probably not be helpful given that words could be read but not understood.
Recently, I had decided to test “just how bad” things were for Zachary in terms of his peripheral vision. Clearly I knew that Zachary “could see”, but, how well was he processing what he saw? A simple experiment involving walking around the neighborhood absolutely amazed me in terms of what I came to see so very clearly in my son. Although I usually worked with Zachary on homework first thing in the morning, recently, I had taken him for walks first thing after breakfast – before doing actual “homework”. Of course, I always “taught him” on walks, so, I supposed walks were technically “homework”, too.
On this particular day, Zachary had eaten and we headed out around eight am. Although we lived in town, there were a lot of trails nearby and large sections of undeveloped land even within the town. One such section was approximately forty acres big. There were plenty of deer, birds, squirrels, hills and stumps and other such things to enjoy while on our walks – and we went for long walks – so long that at times, when I said “Zachary, do you want to go for a walk with mommy”, he had recently started to say, “No, not a walk… stay in the house”. Well, there would be none of that – especially not when it was so beautiful outside.
Zachary had a book called: The Giving Tree by Shel Silverstein (ISBN: 0-06-025665-6). This was one of our favorite books, for many reasons. I enjoyed this book not only for the lessons of life that it taught, but also, for the fact that it showed the many things one could get from – a tree. Even when the tree was completely gone, and all that was left was a stump – the stump itself had something to offer – a place to sit and rest. On one of these long walks, I had found a perfect tree stump in this forty-acre area to sit and rest and had called it – “our giving tree stump”. At the time I had found this stump, Zachary had been getting rather tired and was lagging behind a little. The mention of “a giving tree stump” had obviously provided that reference for him that this was a place to rest for a while and so, he came running to the stump and quickly sat down next to me on this rather large tree stump that had been left after the tree had been cut away.
By this time, I had learned a long time ago that if I wanted Zachary to do something, all I had to do was to make use of certain words that triggered certain memories and I could easily get Zachary to do what I wanted. During “meltdowns” for example, all I had to do was use “word associations” to quickly bring him back under control emotionally. Zachary was not physically difficult to control, but, emotionally, he still had a few “meltdowns” now and then when he became frustrated. When that happened, I simply started with the basics… if drawing his attention to something to count did not work I just looked for another “trigger” in the form of a word association. Counting had always worked well in the past – especially when Zachary was younger as that always – almost instantaneously – brought “order” back to his world.
Now that he was older, using “just counting” did not work as well as it once had and so, helpful “triggers” simply had to be words that would trigger positive associations so that emotionally, he could regain control of his emotions or the word would trigger “recall” of “other things” that served to distract him from the currently stressful situation. Tastes or smells also worked well – rice milk, gluten free pretzels, etc. – not surprisingly given smell and control of emotions were co-located in the frontal lobe.
Although Zachary sometimes hesitated when I asked if he wanted to go for a walk, all I had to do was ask him if he wanted to go find “our giving tree stump” and, realizing he could rest even during a long walk, he would agree to go along with me.
So, off we were for my little experiment. Again – just one of those “fun experiments” I often engaged in with Zachary as I continued to look for hints and clues into the workings of his brain. As we found our way to the trails and started to walk on that forty- acre area, we took a path we had taken before. Often, I liked to “mix things around” by taking different routes where possible, just to provide variety for Zachary. As soon as we hit the path, Zachary was off and running on the trail. There were obviously no cars around and so this was a good place to relax and have fun as I worked with Zachary to see what he could or could not do.
The path we walked on was used by snowmobiles in the winter. By spring, several roots had inevitably been uncovered. As Zachary took off running, he fell. I said: “Are you alright?” and he gave me his usual: “I’m alright”. He was up and off again… and once again, he fell, this time, a little harder. Again, I asked: “Are you alright?” Again, he said: “I’m alright”. I had taught him to say that in the past but this time, given he had fallen a little harder, I decided to give him that “other reference” and so I said: “Zachary, when you fall, if you hurt yourself, you say I’m hurt”. I always tried to make sure that Zachary knew there was more than one answer he could give – and in this case – the answer was not only a “variation” of the same thing – it was an opposite that would elicit a very different response on my part and I did not feel that Zachary had well-enough mastered the ability to give that “other reference” to the question: “Are you alright?” – I very much felt his reference for this was primarily – “Yes, I’m alright” – and that this reference could be given even when he really was not ok.
Again, up and off he went… and again, he fell again. He probably fell four or five times this way. It was almost as if he did not see the roots sticking out of the ground at first – until I told him to “be careful” and specifically pointed out the fact that he could trip on roots sticking out of the ground on the trail. It amazed me how often he fell… in such a short time interval. So, that was rather odd in and of itself - but, we went on – now with Zachary being a little more careful when he ran.
We saw two deer. I asked Zachary if he had seen them – he did. We kept walking. Soon, I started to ask him questions. We had recently been working on the difference between “a statement, a question and an exclamation” in his homework. We had only spent a few hours on this subject and as such, I knew Zachary still needed a lot of help with “the difference” among these. I therefore decided to make this a lesson to teach him about “questions” while I also evaluated “his senses”.
As we walked, I told Zachary: “Zachary, I have a question for you”. I said, “The question is – What do you hear?” I defined what I was asking as “the question”. Zachary gave me one of his typical one-word answers – “birds” – although I knew he could easily put up to eight words together in a sentence now. But, nonetheless, again, I got the typical “use as few words as necessary answer”. Alright. There had not been a lot of words there, but at least the answer was correct. I prompted again…. “What else do you hear?” He replied: “a truck”. Indeed, in the distance, you could hear a truck. I prompted again… “What else do you hear?” This time, he replied: “wind”. Yes, that was correct, too. I then tried to get him to speak more by saying: “Tell me what you hear”. Even though he would answer with one or two words – again – I would say: “Say, I hear…” and then I would say something he heard… like “birds, the leaves rustling in the wind and branches rubbing against each other”. I would then ask him to repeat these things by saying: “I hear, birds, leaves in the wind and branches rubbing against each other”. The sense of hearing seemed to be working fairly well and Zachary could easily understand what I was asking.
The next question… “The question is – what is your name”. “Zachary” he replied. Yes, that was correct, but I had him repeat, “My name is Zachary” in order to help him understand that “more words were better” and that answers should involve more than just one word. I then took a stick and circled a section on the ground and asked Zachary, “what do you see?” When asked a specific question like this, Zachary could give me the correct answer: “an acorn… sticks… leaves”… and so on. I knew Zachary had great difficulty in perceiving moving objects – like cars – and so, I spent quite a bit of time on assessing his “vision”.
I said to him: “Zachary, I have another question…the question is…” I hesitated as I thought of my question… but finally, said: “The question is… what do you see over there?” as I pointed to a fence up ahead. Zachary looked up and said: “The question is… what do you see over there?” He repeated what I had said instead of giving me the “answer”. I thus made sure he knew what the difference was. I said: “Yes, that’s the question… what do you see over there?… but, what is the answer? What do you see over there?” He finally looked up and said: “a fence”. Right again. That was encouraging. We did a lot of “the question is” type things and I reinforced always making sure he knew the difference between “the question is” and “the answer”. I also tried to “vary” the way I asked the question – sometimes just asking it instead of telling him “the question is” because in real life, I knew that he would not have “that qualifier”.
Overall, Zachary did well with these exercises with “questions and answers”. We had finally arrived to our “giving tree stump”. We rested there for a while and enjoyed the birds. As we sat there, I asked Zachary: “Do you see clouds in the sky?” Without even bothering to look up – he replied: “yes”. This was not good – it was a clear blue sky and there was not a cloud to be seen when I asked him this question. The fact that he had not even bothered to look up was not exactly comforting either. I knew he was back to his “reference living” and drawing from a previous memory to provide his answer. I asked him at least five times… each time, he did not look up but simply answered “yes”. Six times in a row, he had failed to use his senses to come to the answer.
I tried something else. I said: “Zachary, when mommy says… do you see… do you see equals look with your eyes…” I tried that a few times to try to make him understand that “see” meant he had to “look” and that a past reference was not the right answer – that “do you see” meant he had to actually look with his eyes. I practiced a few times… “do you see equals…” and waited for him to say “look with your eyes”. It took a little while, but he finally got it right. I then did the same type of “equation” for all his senses. I was amazed that he actually had trouble with this – especially since earlier, I had already worked on “seeing”, “hearing”, “smelling” and “touching” with him on many occasions. When I said: “do you hear equals…” and waited for the “listen with your ears”… he actually had to take some time to think about that… a few times, when I asked him, he still got the answer wrong. When I said, “do you hear equals…” and waited for “listen with your ears…” he was still focused on “the eyes” and paid no attention to the “hear part”… as soon as he had heard the reference “do you”… he just blurted out the answer he thought I wanted even though he had heard the entire statement not just the “do you” part of it.
Well, I worked quite a while on the “do you see equals… look with your eyes”, “do you hear equals… listen with your ears”, “do you smell equals… smell with your nose”, “do you feel equals… feel with your skin or your hands or feel with your heart… like feel sad or happy” and “do you taste equals… taste with your mouth and tongue” as we continued to walk.
After defining each of these – several times – I said them along with Zachary. He could now say: “do you see equals… look with your eyes”, etc. just fine for each of the senses. I then asked, “Do you see a big rock?” There were no rocks around – at all – yet, he responded: “yes”. Over and over I asked him if he saw a big rock and over and over – he answered – “yes” even though there was not so much as a small stone to be seen. I asked Zachary to show me the rock. He totally ignored me and kept walking.
I tested his other senses – they were fine. But, when it came to “do you see…” I simply could not believe what a difficult time Zachary had with matters relating to vision. Of all senses, vision was clearly the one for which he relied the most on a past reference – where sensory input was basically not even considered. Thus, although I knew Zachary “could see” physically, when he needed to “look” at his world to provide a response – often, he simply did not do it. There had to be a great deal of prompting for him to actually look around and actually take into consideration incoming sensory visual input.
Again, I tried to get him “to look” as opposed to relying on a past memory… “Zachary, do you see clouds in the sky?” Yes. Again – there were none and he had failed – to look!
At first I wondered if the issue was only one with his peripheral vision – but I did not think so. If I specifically circled something on the ground – thus classifying something as “apart from the whole” – then, he could get the right answer and tell me what he saw “in the circle on the ground”. Even though he was tired, Zachary could respond appropriately for the “other senses”, but for vision, that just was not the case. Some answers were correct, but most of them – were not!
By this time, we had made it back to the road. I was still asking Zachary “what do you see…” type questions. Interestingly, he would correctly answer… “a blue car… a red truck… a green truck…” His focus was very much on vehicles… as it had always been in the past.
We had lived in the suburbs of Chicago when Zachary was first born. If there was something Zachary had seen – it had to be - cars – trucks – vans, etc. He had always loved to look at vehicles. He had always been fascinated by the motion of the wheels and loved to say: “green truck” or “a big red truck”… or “a white van”. I asked him: “What else do you see?” - looking for a response that involved something other than “a vehicle”. “A yellow house”, he replied. Yes, that was right – there was a yellow house in the neighborhood. “What else do you see?” Zachary looked up, and said: “a blue sky…”. By this time there were clouds in the sky and so I said: “A blue sky… with…” as I waited for him to say “clouds”. He replied: “A big blue sky with white clouds”. Right again. I simply was completely confused as to why he “saw” certain things and yet failed so miserably to see others. What was going on?
As we walked on this particular day, and slowly made our way back to our street, it occurred to me that this was rather “odd”. Zachary easily identified vehicles parked everywhere in our neighborhood and yet he had a very difficult time perceiving oncoming cars and relied on past memories when I had so often asked him if he had seen a “car coming” in the past. So many times there had been no cars coming and yet, he had said there were. On other occasions there had been cars coming and he had said there were none. Zachary had a “blank look” or looked in the opposite direction as he tried to answer the question based on a past memory. On so many occasions – incoming visual input was simply not even considered! Yet, when it came to vehicles parked in driveways, Zachary noticed them right away and these were always the “first things” he stated he saw before moving on to other objects – like the yellow house – when he ran out of “vehicle options” and I kept prompting for “more things he saw”.
We finally made it back home. We had been gone almost two hours. Needless to say, both of us were dragging a little. We had a rather long driveway. As we came up the driveway, I said: “Zachary, whose house is this?” “It’s a white house”, he replied. “Well, it’s really more of a light, light brown Zachary… but, who lives here?” I said. “A white house” he replied. Ok – he was off on the color a little… not a big deal I thought to myself. We then made it to the area where the car was parked. Zachary placed his hand on the car and said: “It’s a very yellow car” as he pushed his finger along the side of the car. That had always been a point of “disagreement” too. I had always perceived the car as more of a very, very, very light yellow – almost a tan color. Zachary always insisted it was “very yellow”. I was exhausted and not about to discuss the “correct car color” at this time. We finally made it into the house. Zachary immediately asked to play on a favorite computer game when we got home – Dr. Seuss’ Green Eggs and Ham by Living Books – A Broderbund Company. He knew “homework” was just around the bend and he had already mastered how to delay the inevitable by asking to “do something else”.
Tired, I agreed to let him play for an hour or so while I rested, too. We had just done a great deal of “work” as far as I was concerned and it was time for a break – for both of us! Of course, my breaks usually involved getting onto my computer – located just next to his and doing either research or email.
Although “the experiment” was over, this issue with Zachary’s visual perception troubled me greatly. What was going on with his vision? As he sat next to me on his computer, I decided to ask Zachary again: “What do you see?” He had always seemed to perceive things better on the computer. He could easily perceive motion on the computer – yet had difficulty perceiving oncoming cars. I wondered if his vision problems had something to do more with two-dimensional verses three-dimensional objects? When I said: “What do you see?” as Zachary played on his computer, he answered: “blue”. Yes, the screen had lots of “blue”, but… “What do you see?” I asked.
It was at that moment that I realized that Zachary was telling me what he saw – colors! I had always thought that colors were important for Zachary but had not paid much attention to them lately. Winters were “very white” and “very long” and even though spring was here, everything was still very “brownish” or “grayish” in the woods where we had walked as dead leaves and leafless trees were everywhere. There had only been a very few pine trees in the forest. Everything else had been oak and maple – trees that had no leaves yet.
As Zachary responded “blue” – again – it hit me like a ton of bricks. I had focused on “objects” while Zachary had clearly focused on colors. I suspected he may very much still have issues with perceiving three-dimensional objects also, and definitely had issues with objects in motion but, clearly, colors – again – were playing a key role in his life. Everything he had mentioned when we had left the woods had color to it… the vehicles had been described as blue, red or green, the house as yellow or white… the sky as blue with white clouds, our car… as very yellow… and now, the computer screen as “blue” even though there were various objects shown on the screen of different colors, too. I knew Zachary had been very tired. But, clearly, his responses had involved – color!
As I spoke to my husband about this issue with Zachary’s vision and the apparently very important role of colors in his visual perception and visual attention, and told my husband how coming up the driveway, Zachary had stated our house looked “white” even though “it was light brown”, I was in for another amazing discovery – my husband told me that he perceived our house as a very, very light grayish green on some days. We all seemed to have a pretty good agreement of colors indoors, but now, I was seeing that sunlight could very much impact how we were all perceiving objects – outside. There were now three people who were seeing the same house in different hues. I thought to myself - men were known statistically - to have more “color vision” problems than women – more color blindness, etc. I asked my ten-year-old daughter to come into the kitchen and asked her to tell me the color of our house. “It’s light peach… or really light yellow on some days… but, other times, it’s almost a whitish or grayish peach”. What! I could not believe this! How could four people all see the same house in completely different hues – and hues that changed based on how bright the sun was. To me, the house always looked the same… kind of a really light, light brown with slightly darker brown shades throughout the siding.
By this time, I had a major headache – and I did not think it was from the sun and long walk I had taken. Family members I thought could shed light on this issue of colors and visual perception had only complicated my understanding of these matters. Indoor colors were more easily agreed on although there certainly were differences there, too – especially when it came to Zachary.
One last time… “Zachary, what do you see on your computer?” I supposed by now, Zachary had figured out that if I asked again, I was looking for a “different answer” – this time, he focused on words and then when asked again, on objects on the screen. But clearly, the order had been color first, then letters, then objects – although I had “experimented” primarily with colors.
I had always suspected colors played a rather significant role in Zachary’s life. He had started to speak again after I had painted his “room of colors” – something I described in detail in both my first and second books. I had always thought that colors had somehow helped to trigger his language production (actual verbalizations) and understanding of language. Now, I also very much suspected motion and perhaps smells could be used to trigger language production, too! Understanding of language was absolutely dependent on categorizations – and certainly, one could categorize things based on colors. Although I used colors in categorizing sentences in the bubble graph concept, initially I had only used yellow or white chalk with Zachary on a green board. I had not initially used different colors and shapes with him but had modified that “sentence categorization” because I felt shapes and colors would better help solidify language concepts for Zachary.
As I thought about all this, I wondered about many issues. Did three-dimensional objects pose more of a problem for Zachary? Three-dimensional functions were after all co-located with visual attention in the parietal lobe. What about colors? Were certain colors harder to perceive? Did the fact that the color of an oncoming car was not easily perceived have anything to do with the fact that Zachary had so much difficulty “seeing” oncoming cars? Did certain colors trigger more of a, “memory or reference retrieval”, than others whereby for certain colors, incoming visual input was taken into consideration but in other cases – it was completely ignored? Clearly, when it came to “what do you see” questions with “cars or vehicles” as answer options, Zachary certainly did perceive those vehicles parked in driveways – three-dimensional vehicles with lots of colors - but no motion.
Of those problems known to occur as a result of occipital lobe damage – problems with identification of colors, locating of objects in one’s environment, inability to recognize words, and difficulty with objects in motion – clearly, the obvious areas of concern I had for Zachary had to do with difficulty with objects in motion and the inability to “see” objects in his environment. I supposed he could “see” them if he were not relying on a past memory, but, his attention to “the object or goal of my question” certainly was not there when it came to vision.
Given memory acquisition functions were located in the temporal lobe/hippocampus – away from vision functions located in the “occipital lobe”, I wondered if Zachary’s lack of “seeing” had something to do with the fact that vision and understanding of language were in separate areas of the brain. Zachary could certainly recognize faces and places and “see them right away” or answer properly when asked: “Who is that?” Was that because visual perception in the temporal lobe was known to be associated with face, place and body part recognition and these functions were co-located with the understanding of language in the temporal lobe – along with face recognition itself?
If asked to identify an object placed before him, Zachary could easily do it. Yet, visual attention (parietal lobe) was not located with the understanding of language (temporal lobe). Was that why my “what do you see questions on the trail” were so difficult for Zachary to answer – especially if color was not involved? Clearly, when it came to Zachary’s visual attention, color won out pretty well all the time. If colors and perhaps motion were critical to visual attention in terms of “what you see”, then, clearly, Zachary had a major problem because colors were processed in the occipital lobe, along with motion perception whereas visual attention was located in the parietal lobe.
If there was one thing that had become clear to me it was that I needed to spend a great deal more time with “what do you see” type questions in order to hopefully trigger more activity in those parts of Zachary’s brain associated with “visual activities” such as the occipital lobe, the parietal lobe (visual attention) and the temporal lobe (visual perception of faces, places and body parts). If my theory were correct, the key to Zachary’s visual attention had to be something co-located in the parietal lobe – to draw on a function there to help Zachary’s visual attention issues. That certainly posed a problem given the functions in the parietal lobe included only the following: somatosensory processing, spatial processing, touch perception, manipulation of objects, goal directed movement and three-dimension identification. How do you possibly use one of these functions to help with issues relating to visual attention?
Three-dimensional identification seemed the best option to start with. Although I wondered if Zachary had problems with three-dimension identification in “the real world”, clearly, he loved those virtual reality type programs on the computer that used a lot of three-dimensional paths – flight, train and car simulation programs that seemed to make you think you were “part of the action” – literally flying or going along for the train ride or car ride.
Perhaps using these programs would help Zachary enhance his three-dimensional functions in the parietal lobe and given these programs required a great deal of visual processing (occipital lobe), perhaps that would help “reconnect” these areas so that they could better work together. The computer activated pretty well all parts of the brain at once – and so, clearly, again, this seemed to be my best option for Zachary in helping him to overcome so many of his issues and this was the best option – again – for helping him to “reconnect” those areas that just seemed to not be working together at this time!
Of course, motion in relation to objects in the environment would still be a problem given the computer itself – the object in his environment – did not change but remained stationary. This was certainly all very challenging to say the least!
In my opinion, there was therefore, a great deal more to issues with motion and wandering off than simply “getting lost” or the inability to read signs or the basics of peripheral vision – although clearly all these issues also played into this. Clearly, when it came to issues of motion, wandering off, and the inability to “get back home”, there were some pretty major issues to consider in terms of visual impairment and how those impairments impacted a person’s ability to correctly perceive his world and react to it. When you then considered issues with pronoun confusion, socialization, general communication/conversation, etc., one could easily see why there existed issues with “wandering off” and being unable to find the way back home.
In Zachary, when it came to wandering off, I had also noticed – especially when he was younger – that he would “walk the line”. In other words, he would follow a line on the road – it could be the centerline if that was the one he happened to be on – it could be a path in the woods. Once on it, he would simply “walk it” and “follow it” – as far as he could physically go or until I physically changed the direction – at that time – in the past – that had resulted in tremendous stress. Luckily, Zachary had also made tremendous progress in this area as well and “walking the line” was no longer the “necessity” it had once been for him. For more on these issues of “walking the line” and issues with changes in direction – another issue seen in both autism and Alzheimer’s, I encouraged readers to read my second book: Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost! This would, in my opinion, help all families to further understand these critical issues also. Some of these issues were also addressed in my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism!
Indeed, for many persons with these disorders, not only were there issues with “not seeing everything about them”, not understanding basic directions and not understanding labels that existed all about, there were also significant issues in understanding one’s own “label” – one’s name and one’s self – something that only further complicated matters if these persons wandered off. The simple fact was that, all too often, they had little or no understanding of “who” they were.
This lack of understanding of “who they were” was greatly impacted by something I believed most had seen as a “trivial matter” – the issue of “pronoun confusion” – a seemingly “trivial issue” that in my opinion – could have huge implications in matters relating to the loss of the “self”!