Expert: Catherine Ridenour - 2/2/2010

Question
Hi, Catherine,

I guess I have several issues that I need answers and advice to. I have a 7-year old who was diagnosed earlier on as developmentally delayed and midly autistic. I would say that he is at kindergarten level, academically, and developmentally at possibly age 4 or 5. I am home schooling him. I am following a program that will help him develop socially, to where he can interact with others sucessfully and so prepare him for the workplace in the future. As part of that, and with having home schooled my older children, I think I can handle his educational development relatively well. The challenges I am dealing with are discipline, handling his fears, and toilet-training. As far as discipline, I am trying to handle correcting him when it comes to relating to his older brothers, who are young adults, and who think he is acting like a typical little brother who can be a pest. It is hard for me to correct him, because iI don't know if his behavior is related to Asperger's, or not. Another thing I am trying to learn to deal with is his fears, in particular, with taking a bath or a shower, and using the toilet. For now, I am giving him sponge baths, so to me this is not the main concern. The main one is toilet-training. I am finding myself, doing like what you described, fumbling my way through trying to deal with a child that is "different." Because to us he seems so "normal," we often deal with him like we would with a "normal" child, but I feel that we should make more of an effort to understand where he is coming from. At age 7, he still uses the potty to pee in, is terrified of the toilet and scared of using even the potty for his bowel movements. My husband has been challenging him to go potty, but he would restrain himself from going until bedtime, usually, when he will then do his business in his diaper. A few times he has had accidents, because he could not "hold it in" and he did not have a diaper on, because it would be during the day. I am not known to be terribly patient, and I don't want to hurt my child. But I am trying to deal with his fear by trying to assure him that there is nothing to be afraid of. But of course, it has not yet sunk in, and I honestly do not know what else to do. I do not want to have to face having to still change his diaper on him as a teenager, but I don't want to torture him and terrify him, either, to where he will never learn to go, and possibly become the brunt of jokes from those who do not understand his situation. Yesterday, my well-meaning mother-in-law had to put her 2 cents in, saying that she thinks he is too old to still be going in his diaper, but she is not really up on what Asperger's is, exactly, or how I am trying to deal with his development. Naturally, I became defensive and angrily explained that it takes time and that I am dealing with it.

I appreciate any advice and recommendation you may have. I have read a bit on toilet-training, but it can get overwhelming. I am still trying to deal with other behaviors he exhibits, like why he will sometimes on his own button his shirt, put on his shoes, or brush his teeth and such, but other times wants me to do it for him. Adding toilet-training makes it that more challenging. Thank you so very much.

Answer
Hi Judith,

I think it would be wise to stop separating "normal" behavior from "Asperger's" behavior. In my book, behavior is either acceptable or it is not. Knowing where it comes from can be helpful, as in the overload meltdown and avoiding situations that provoke problems. But the real world is not going to tippy toe around him and he's got to learn to cope. This sounds harsh, but we didn't even know our daughter had A.S. until she was 15 and we required her to behave as well as she could believing she was different not abnormal. Frankly, it worked out better that way. It is okay to expect him to react at his functional level, but don't let him fall below it. (I found the "Love and Logic" parenting materials very helpful. www.loveandlogic.com)

You are probably correct that, emotionally, he is about at 4 year old level. Most 4 yo kids will sometimes do and sometimes not do the "big boy" things. Leaving babyhood is hard for all children. However, once you know he CAN do a task like dressing himself, then it should be his job to do it. Just be matter of fact. "I know you can do this, I'll be in the kitchen (or wherever) doing my job (like making breakfast)." Don't coddle him on these kinds of issues. It does him no favors. You know all about "routines" for these kids. Make dressing himself part of the morning routine. We get up, we use the bathroom (eventually), we get dressed, then we eat breakfast. No breakfast in the pajamas. Let him make limited choices. "Do you want your red shirt or your blue one?" is far easier than "What shirt do you want to wear today?" If he says he wants the green one, okay, at least he chose a shirt, move to the next item. Lay out the clothing and leave the room.

Yes, he may throw a tantrum sometimes. Remove yourself from the vicinity and let him scream. Not having an audience makes it less interesting. Don't be surprised if he follows you and starts in again. Just leave, again. What gets attention is reinforced. Behavior that is ignored dies out.

Toilet training is also one of those issues that kids are quite variable in achieving. I think, if you ask around, there a quite a few 4 yo boys who are not fully trained. Neurological development can be slow in A.S. kids. He may not be quite able to control himself, though withholding is a common problem in kids on spectrum. We had a terrible time with the withholding issue, but at a younger age.

One way I have heard to overcome toileting fear is starting with the clothing on and just sitting on the lid. Move to sitting on the seat with diaper on. Then cut a hole in the back of the diaper and move along in slow steps. I never flushed a toilet when the child was standing near it, it is scary when you are small. (Of course, there's always the child who finds flushing fascinating!) Get a seat that fits on top of the regular toilet designed for smaller behinds. It gives a much more secure feeling to the child. With children #2 and 3, we never even used a potty because this was so much less mess.

When it comes to fears, I think too much reassurance falls into the reinforcing attention category. Yes, we want our children to be comforted. But, with a persistent, irrational fear a less emotionally engaged approach may be better.

First, notice how YOU feel as you deal with this problem. If you're up tight, he will be, too. By now, you're quite frustrated. This is contagious. Perhaps a week of not even trying to direct his toileting habits will give you both a fresh start. (During that week, if he uses his diaper, just notice, "You need a change. Please, go get the things we need and meet me in the bathroom (or wherever you do this). Change him and go on with life, no reprimands.

Use that week to research and choose an approach you are comfortable with. Then, start anew and stick with your program. Keep your feelings out of this. If you think rewards will work, go that route. Reward successive approximation, that is, if he consents to sit on the potty, reward whether he performs or not. Slowly, up the ante. Whatever the plan is, get Dad and Grandma on board. Be consistent between caregivers.

Be sure that instructions come one at a time not in a list. Separate "brush your teeth" from "put on your pajamas."

Since you are homeschooling, build "social stories" into your day. These are designed to teach social skills with short stories written from your child's perspective as the person doing the task. You could write your own, together. Illustrate with stick figures or cut pictures from magazines. "Johnny is learning to use the toilet." "He is a big boy, now." "He wants go to the bathroom by himself." .....etc. Adapt to whatever reading level is appropriate.

You did not mention if his stool is hard and painful for him. If this is the case, ask his doctor about a product called Miralax (available over the counter). It softens the stool without cramps or runny stools. It comes in a powder and is pretty easy to mix into juice, pudding, milk, etc. It has no flavor and no gooey texture. It can ease going, promoting a more regular elimination that makes predicting when to go to the bathroom easier for you. Also, once he's softer, you can adjust the dose downward to maintain ease without too much frequency.

Here are some links you should check into:
http://www.polyxo.com/socialstories/ (example stories you can use)
http://www.angelfire.com/pa5/as/asteachersites.html (teaching resources)

My favorite toilet training info site has disappeared from the web. :-(

Know that his emotional age will progress just as his mind and body do. He may be behind well into his 20's, but progress will occur.

Best wishes,
Catherine