Issue With Potty Training... Why Is This So Difficult For The Autistic Child?

Could Potty Training Issues And Toe Walking Be Related?

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Update November 2007 - Note that one of the signs of epilepsy is incontinence - or loss of bladder and bowel control.   Given that we know mercury fries neurons in my opinion, issues with potty training are more than likely related to severed neurons in parts of the brain involved in potty training (i.e., cerebellum and frontal lobes, etc.).   We certainly know that the cerebellum is one of the areas "most hit" in autism.  See my Research File for much more on this issue! END OF UPDATE

This was the one area I had greatly struggled with - at 5, Zachary had yet to be potty trained... although the writing of 2 books and the creation of my website, all in approximately 10 months had made it so that I had not spent the time with him I should on this issue...  I was hoping to do so shortly.   I could get Zachary to do a "big boy pee-pee" on demand (he still would not just go by himself when he needed to), but stools were still a huge issue for him.  

I knew that Zachary could "sense" when he needed to go relieve his stools.  I did not know if he could do so as easily for his urine.   For example, in the past, I had waited quite a while for him to go potty and do a "big boy pee-pee".  On one occasion in particular, I decided to let him "off the hook" and just wash his hands before leaving the bathroom without "having gone".   I had just finished asking Zachary if he "needed to go" and he answered "no".  

Within seconds of turning on the tap to wash his hands, Zachary started to pee on the floor by the bathroom sink (I had made the mistake of not putting a new diaper on right away).   As soon as Zachary realized he was "peeing", he turned around and headed right back to the potty... standing in front of it in an attempt to finish up there.   Needless to say, I was not that fortunate since once he started to pee, he had difficulty holding it in to make it the few steps to the toilet.  Thus, I had always wondered if he could really "feel" his urine coming.

I definitely did know that he could "feel" the stools though.   He always had "that look" and did the "stop in your tracks and push" when he needed to go.  So, I knew he could "feel" that.  The interesting thing, however, was that even though I knew for a fact he could "feel" his stools coming, even if I was lucky enough to put him on the potty before anything "came out", Zachary simply would not "perform" even though he was perfectly ready to go just prior to my putting him on the potty as clearly evident from his “crouching position”.   I had, at times, even waited up to 2 or 3 hours, hoping that if he just "went", he could get used to it.   But, Zachary could "wait me out" until the next day if he had to.   He simply refused to go!

And, of course, after having waited even several hours, eventually I would break down and finally let him off the hook.  I had been so determined to finally potty train him.  For a while, I actually had a tv and vcr in the bathroom.   We watched countless movies there,   worked on countless flashcards and other exercises.  I tried stickers as rewards, the clapping of hands... everything...but, still, regardless of what I tried, Zachary simply refused to go.   In total, I was lucky enough to get perhaps 3 poops in all the times I tried to potty train him... in all the hours I had spent on this activity (especially right after the writing of my first book...that was 8 months ago).   I spent most of March and April of 2002 trying again... but, still no success.   Yet, often, within minutes of putting that diaper back on, Zachary would poop... something I was sure many parents of autistic children had experienced.

Although I honestly had not had the time to work on this issue with Zachary the way I needed to, recently,  I think I may finally have the answer as to "how" to go about it the next time I do try to tackle this – in September or October of 2002.

Potty training had been such a huge area of frustration -  I think more so for me than for Zachary himself - that I had actually started to often actually include "potty training" in my prayers at night... as I was sure many other parents had done also.   But, why was it so hard?   Why did so many autistic children have such huge problems with this issue?   Was the answer a physical one or something else?   As with so much, I now always looked for that “something else” given the “parts” – like the fingers – often seemed to work just fine! 

To help with constipation, so often seen in the autistic, a casein free and gluten free magnesium and calcium supplement was often recommended.   Many children were not casein and gluten free and those who ate a lot of cheese, apples and breads,  for example, could indeed have issues with constipation, and, as such, perhaps parents needed to consider looking into the above-mentioned supplements.  But, Zachary had pretty well always been on such supplements.  So, for him anyway, I did not believe "regularity" was the issue... although I knew this was indeed a huge issue for some children... or was it?

Was it constipation, or was it “something else”?  I kept coming back to that.   I had read that the colon could stretch to four times its normal size... absolutely amazing indeed... and dangerous, because as more and more bacteria and feces accumulate in the colon, the more likely an infection.  But, still, that was a very interesting piece of information.  I then started to consider other things like the fact that other parents on discussion boards suspected toe walking may somehow be related to constipation... and indeed, I suspect it was, but perhaps not in the manner in which parents thought it was!

Issues With Toe Walking And Potty Training… Could They Be Related?

Parents seemed to think that constipation caused toe walking... but, I was beginning to be of the opinion that the very opposite may actually be true - that toe walking causes constipation and that this was simply another coping mechanism in the autistic child.  

It certainly would make sense if examined in terms of issues with partiality and the fact that so many autistic children took so long to be potty trained.   I came to wonder if "toe walking" was simply tied to issues with "potty training" and the child's inability to cope with the "parts" that made up "the whole" and the failure to integrate the “sensation part” (feeling the need to go) with the appropriate motor response (walking to the bathroom and performing the necessary “things”)... in this case, those things that physically needed to occur for a child to go to the bathroom... the physical removal walking to the bathroom and the physical removal of "a part" of the child... his urine and stools... from the whole - his body.

Walking on one’s toes created a “firming sensation” in the buttock area (yes - I actually tried it, and suspect, now, that many others will too  :o)  ).  I came to believe that toe walking was simply another coping mechanism used by the autistic child to delay the inevitable separation of the “parts” from “the whole” – the stools from the body. 

If sensory information (from sight, sound, hearing, taste and smell) was not properly integrated, surely, that could be true when it came to such “physical” sensations as well as they related to “potty training” and the “urge to go”.

Physical activity had a way of preventing the stools from leaving the body.   Truly, I could, honestly say that I had never seen a single child in my life who had ever pooped while engaged in physical activity.  All children just naturally seemed to “stop, crouch and push”.

I had seen these same behaviors in Zachary… and, so often, had immediately placed him on the potty upon seeing “the sequence”.  Yet, he simply refused to go – until I had put a diaper on him again.  That diaper, I believed, allowed him to think  “the parts” were still “with him”.   No matter how long I waited when I put him on the potty, Zachary could always “wait me out”.

So, again, if the “stop, crouch, push sequence” was there, surely, Zachary could feel it was time to poop – so, he had to be refusing to do so for some reason.  But, as soon as that diaper went on, often, within a matter of minutes, there would be the poop!

I, therefore, began to look at this issue, too, in terms of partiality.   Like so many other issues that involved “the self” and partiality, such as finger pointing, cutting hair/nails, looking in the mirror, etc., many issues in the autistic involved removing a part of “oneself” from the whole – and poops and/or urine certainly fell into that “category” also!

Issues with potty training certainly would make sense if examined in terms of issues with partiality. 

This would also be something very easy to investigate or research.  It certainly would be interesting to see how much "toe walking" was exhibited by children who were potty trained verses those who were not or how much toe walking occurred before or after a bowel movement!

Of course, if you had parents like myself who were not "that concerned" (at least not recently) with the issue, that would be another factor to take into consideration.   Zachary did very little toe walking, but he did "hold it in" when I knew he was ready "to go".    Investigating this would necessitate a correlation between extent of toe-walking, time between  "poops", whether or not parents punished or not or showed distress when children failed to use the potty properly.   I was not saying that parents who had children who toe walked more were "harsher" on their children... some may indeed be... but, perhaps others just had children who figured out early on that toe walking could delay this separation of “the parts” from the whole for days, and as such, they simply refused to go to the bathroom for days rather than "go potty".   A good graduate student would know the appropriate variables to look at in investigating this issue.  :o)  

I knew constipation was not the answer for Zachary... and his toe walking had all but disappeared... perhaps because I had been so "not concerned" with this issue anymore and had simply learned to tolerate the fact that "this was just going to take time" and so I had become very good at simply "allowing him to do in his diaper".  Given all the issues that I had come to understand based on the inability to cope with "partiality" and understand the whole without first understanding the "parts", I came to look at potty training as it may related to this issue specifically. 

Going to the bathroom was a "process" in and of itself, so perhaps that had something to do with it, too.   However, as I thought more about this issue, as it related specifically to partiality, it all began to make perfect sense.   Going to the bathroom literally involved releasing a "part of oneself"...literally losing "parts to the whole"...  undoubtedly what could be a very stressful situation for the autistic child.  Could this be the reason autistic children were "holding it in" to the point of often becoming so constipated?  The reason they were so difficult to potty train?     I now truly suspected that it may very well be and that partiality, again, was the key. 

If this theory was correct, then the key would then lie in showing, again, how the parts fit into the whole... only this time, the parts that truly were parts to the whole had to be somehow identified as “not really belonging to the whole”.   A difficult task indeed.  

So, how do you do that?  How do you explain to the autistic child that these "parts" were really not "parts of himself" and that it was ok to "let them go"?

Well, the thought came to me that Zachary understood the concept of "garbage" so I simply told him that when he ate (I pretended to be eating something and made "eating sounds" as I explained this concept to him), his body used up the food, but then, it had some "garbage" it needed to get rid of... I called it "Zachary garbage".   I then told Zachary that this "garbage" was the "pee-pee and pooh" and that they needed to go in the "Zachary pee-pee and pooh- pooh garbage... the potty garbage".   Amazingly, he grasped the "concept" right away... his first response was:  "WOW" followed by "Zachary garbage".   He thought the whole concept was rather funny and kept saying: "Zachary garbage".   So I kept saying:  "yes, mommy did not want to see Zachary garbage in your pants... you have to put those in the pee-pee and the pooh-pooh garbage".  

I introduced this concept to him  perhaps a month ago.   He had been less stressed in terms of my insignificant attempts to potty train him, but, I honestly had not had the time to work this issue with him since I had been writing this book almost nonstop since the time I introduced the “garbage concept”.   Unfortunately for Zachary, his mother had put more emphasis on sharing this knowledge with other parents than on making sure his poop and pee-pee ended where they needed to be.   :o)   You had to prioritize everything, and I had dealt with this one for so long, that waiting a little longer really did not matter that much to me.  :o)   If anything, the time I had spent writing had simply allowed Zachary to familiarize himself with the concept that this was "garbage" as opposed to an actual “part” of himself.   I was anxious to see if this concept would help train him once I was able to make more time and once again tackle this issue.  :o)

Since potty training was such a huge issue for autistic children, as parents wrote to me and explained "how they did it", I would share these experiences with readers on my website,  in case the experience of other parents provided answers for others as well.  Two such suggestions were provided below – note the common factor…

The reason I could see these particular examples of “what to try”  work was because, based on the need for "order in understanding everything", I could see an autistic child wanting to "put it somewhere, where it belonged"... in the "garbage" or "bucket", I thought these were definitely worth a try.  

There was a common thread between the two suggestions that “worked” and were provided below: parents removed the diaper/pull up, etc.  

If you just could not bring yourself to do that, you may want to try putting a removable "insert" in your child's underwear to make him understand the concept of "garbage" a little more (that would be my “last resort” to this issue)... something such as a sanitary napkin may provide a great "liner" for this particular function... it would help make the "mess" easier to clean if Zachary pooped in his pants.  This  would also help "solidify" the concept of "this is garbage" and "this garbage goes into the potty garbage". :o)

To social workers or therapists who disagreed with this suggestion for “psychological” reasons… well, I can only say that you probably did not have a 5, 6, 7, 8 or even 9 year old who was not potty trained and had probably never experienced just how difficult life could be with children who were this old and who still could not use the bathroom on their own.   Many parents awoke several times during the night to change bed sheets for these older children.  Having a child who was this old and not potty trained was more than simply a “potty training issue”.  There were issues in terms of the school system, in terms of self-esteem, etc. as these children were often laughed at or made fun of by other children, etc.   And thus, if trying this “method” helped to potty train these children, then, I personally, believed it was worth a try and society needed to understand that rather than criticize.

Suggestion 1 – From Heather

What Heather did was to let her son go "bare butt" outside when she knew her son was due for a bowel movement.   She put the potty nearby in the yard.  Eventually, her son just "had to go" and so, he sat down on the potty, and went.    

I would recommend putting a long t-shirt on your child to cover his bottom if you do this...just so that neighbors do not complain to authorities that a naked child is outside – better to save yourself that headache – we all have plenty more to focus on without bringing them onto ourselves.  :o)

Suggestion 2 -    From Karen – in her own words…

"We had gotten into a terrible habit of giving him a pull up to poop in for 2 years. [exactly what I myself am guilty of right now] That was tough to break. Finally I said no more pull-ups and he started going in his underwear so then I let him run around in the house without underwear and named the potty insert, which is removable, the "underwear bucket". He grabbed it held it under him and while half standing pooped into it. His reward was 5 president stickers (Presidents have been his passion since age 3). So we did that for 1 week. Then we made president pictures with each one saying a different statement about poop.  On a visual schedule I showed on top: poop in underwear bucket 5 president stickers poop in toilet president saying

That afternoon he sat on the toilet and when he actually did it his eyes grew big with HUGE smile and he said "I love pooping on the toilet and splash it in the water". He then received 1 president saying and was so proud. (The stickers got old because he already earned each president so the 1 new president with a saying was like gold to him)."

I did believe that actual “physical sensation” could be an issue for some children, and I think more so with the issue of urine.   I once read a parent tell the story of how his 9 year old autistic girl, not yet potty trained, had peed in bed during the night.   This father explained how he and his wife often had to change the sheets 2 or even 3 times during the night.   Upon waking his daughter and telling her she had “wet the bed”, the daughter kept saying to her father:  “no, I didn’t”.   It was literally “as if” she could not “feel” the urine… even as it was right there, on the sheets all about her.    Patience and understanding were indeed words to live by when you were the parent of an autistic child. 

This issue of potty training in the autistic child was indeed a serious issue for parents who were for the most part, already very sleep deprived.   To have to change sheets several times a night, surely, had to be exhausting and frustrating, but, the additional stress of knowing your child was laughed at by others, surely, was worse than the physical issue itself!  

In closing, I wanted to caution parents to be careful in disciplining their children over these issues, because in all honesty, I did believe these children could simply not help themselves… either because they could not physically “feel” the wetness or because their brain made it such that they were terrified to lose a part of themselves… literally!  

Thus, again, the key may lie in helping the child understand the parts to the whole of potty training through the use of labels and coping mechanisms that may help.   Perhaps a timer in the kitchen would bring enough order to teach a child to “go” to the bathroom upon hearing the timer go off.  

As mentioned earlier, this was still an area I was struggling with but hoped to address in the fall of 2002.  I just needed more time to spend on this one… but, if indeed I was correct in this issue and that “not going” was the child’s way of coping with the apparent loss of a part to himself, then, perhaps there was finally a light at the end of the tunnel in that the issue was at least better understood now… and understanding the issue was half the battle!  

I did spend two days letting Zachary run around the house with no diaper in late August and put his potty in the kitchen/living room area.   Amazingly, with absolutely no prompting on my part, Zachary peed in the potty 5 times in 2 hours!    He also referred to the potty as his “garbage cup”  - words he came up with – how very interesting!   The “pooh” ended up on the carpet, almost 2 days later – he had held it in as long as he could,  but, still, this was progress.  :o)   I truly felt taking the diaper off would be key in overcoming this issue once and for all!   I think I  now understood why Zachary always seemed to need to have a pair of pants or shorts on too!

In early September 2002, I spent another day observing Zachary in terms of what cues he gave when he had a bowel movement coming.   I had relatives visiting at the time.   I noticed Zachary doing a little bit of “toe-walking” and pointed it out to my relatives, saying:  “I bet the poop is coming”.   Sure enough, within minutes, he had pooped in his diaper… and the toe walking had mysteriously disappeared!  Very interesting!!! 

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