Help me understand my son, even when he doesn't speak.

October 15, 2007 2:10 PM

For anyone with autism experience: My young son has had two episodes of being absolutely terrified of our bathroom. What gives?

Here are the details:
- 5 year old boy, moderate to high fuctioning, slightly verbal
- One working bathroom that he uses every single day with no problem
- One window with a normally clear top section. The bottom section is not frosted, but you can't see anything but silhouettes through it.
- No trees or bushes outside the window
- Backyard fenced in, no dogs, inside cat

So a couple nights ago, my little guy was in bed but he didn't go to sleep by the time we did (11:30). Five minutes after we laid down, we heard him crying and we brought him in our bed, where he fidgeted and squirmed for a half-hour. I asked him if he needed to go potty and he began to scream. Not crying or whining, but full-on screaming. I eventually got him in the bathroom where he continued to scream, while peeing. The whole time he was in the bathroom, he stared at the window. As soon as he finished, he ran out.

The next morning, he checked the window out by peeking around my body, then went into the bathroom quietly, although he was still checking out the window.

There is a light in our backyard, but he seems to be staring at the top, clear section of the window, so that shouldn't look any different than the streetlights, which are clearly visible from his bedroom. This is the second time; the first time, I thought he'd had a really bad nightmare, but I think he was wrong.

Does anyone have any ideas what could be scaring him, and how I could get him to adapt?

posted by mitzyjalapeno to human relations (17 comments total)

Perhaps a bird or a bat flew by? Something like that?

I honestly have no idea if this can help autistic kids, but I've always liked Terry Pratchett's approach: if the kid is afraid of monsters under the bed, give the kid a sword. Eventually they'll realize they were safe all along. Broadly, I wonder if that could apply? He's only 5, so would some sort of 'magic shield' or something help him out?
posted by dirtynumbangelboy at 2:13 PM on October 15, 2007

When I was his age and a bit older I had disturbing thoughts about an innocuous space in our backyard, just a sense of being very tiny (2" tall) and looking up at our brick planter, which made me feel very threatened and nervous. In hindsight it may have been a fear of a larger world or something, but the pieces involved (bed, the backyard) didn't really have anything to do with why I was upset. Normally this would be in the form of a nightmare, but was just my imagination as I was drowsing.
posted by rhizome at 2:29 PM on October 15, 2007

Does anyone have any ideas what could be scaring him, and how I could get him to adapt?

I have an autistic son.

It literally could be anything. He could've dreamed about the window. Who knows? These things happen to all children of all stripes.

To get him to adapt you must stick to the routine, whatever you have previously set up. If not, set one up that's loving and useful and repeatable. Routine, routine, routine. Let him feel mastery of the environment. Then, and only then, should you start introducing things slowly.
posted by Cool Papa Bell at 2:34 PM on October 15, 2007

From cacophony's wife:

I was a special education teacher and currently work in autism research, so hopefully I'll be able to give you some useful information.

The situation you describe is not uncommon at all. My assumption would be that at some point recently, he saw something in the window of the bathroom that freaked him out. It could have been the way the light looked, the way a leaf blew across the window, anything. Children with autism don't always process sensory information the way that we do, so something that might seem completely innocuous to you or I can really upset them. He might not completely understand what he saw or why it upset him.

I would not worry about trying to figure out what upset him, and focus more on helping him overcome his fear, so that he can go back to using the bathroom without being upset. I would suggest continuing with exactly what you did the next morning--go into the bathroom with him, let him check everything out, and let him complete the bathroom routine once he's decided it's safe. If he gets very upset again, I would suggest that you try to avoid forcing him to go to the bathroom. Don't make an issue out of it if you don't have to--stay calm, and that will help him to stay calm.

I don't know if your guy uses a visual schedule or anything like that, but if he doesn't calm down about the bathroom soon, I would suggest making some sort of a schedule for going to the bathroom--walk in, check window, sit on toilet, etc. Schedules are often really useful to reduce anxiety and outbursts in kids with autism.

Hopefully that was somewhat helpful to you. :)
posted by cacophony at 2:40 PM on October 15, 2007

Your little boy had a full bore night terror. Keep in mind that nightmares can be caused by physical pain or discomfort, like your arm falling asleep or really really having to pee, which happens often to little kids. If he had to pee really badly, he probably had a nightmare before he woke up. In a night terror, he sort of gets up, but doesn't wake up. So your kid may have been screaming and peeing and talking, and he still may not have been fully awake.

To your son, the situation presented as "There is a guy/monster outside the window and he's coming in and you want me to assume the most vulnerable position possible, sitting on the toilet with my pants down urinating? I shall do so, mater, but under protest. WAAAAGGGHHHH!"

And I can relate. Be thankful your kid didn't have sleep paralysis with its attendant hallucinations.

When I was a kid, I had nightmare (full night terror/night paralysis, in fact) about "Man On Fire". Man On Fire was the image cast by those awful orange sodium lamps passing through hazy windows in my room. The orange square at the top is the head. The bottom one is the torso.

The thing about Man on Fire was that if I happened to be having a routine nightmare and my eyes flitted open while I slept (this happens with kids, watch them sleep) then my unconscious eyes would see two orange squares roughly in the shape of a rectilinear head and body, but that would get projected back into my nightmare, which would switch to a man roughly 7.5 feet tall, on fire, at the foot of my bed. So of course this is a horrible nightmare and I would wake up.

Only to find Man on Fire still at the foot of my bed when I was awake, because the orange squares that formed him are still there. You do not regularly wake up from a nightmare to find the nightmare still there, so you can understand that this would trigger hyperventilation, paralysis, panic, etc. Ah, childhood. Oh, wait, this kept happening to me well into my 20's, and even when I moved to a different city. Man on Fire rode the sodium lights and found me wherever I hid.

In your window, is the top section is separated from the bottom section by a wooden bar (or they are separate panes framed in wood?) Get down at the kid's vantage point, close one eye and squint. This kills the detail, and leaves only shape and contrast. What does it look like? Something? And arm? A hand? A face or skull? Is there a branch out there casting a weird shadow?

Your kid had a bad dream, and being autistic may exacerbate the response (IANApsych), but I can assure you this happens with kids who aren't austitic. Hell, this happens with grown ups.
posted by Pastabagel at 2:48 PM on October 15, 2007 [3 favorites]

I would think that something must have spooked him the first time he got scared in the bathroom, and spooked him pretty badly since he started screaming at the very idea of going into the bathroom at night a second time. As other posters said, it could literally be anything.

I think you did the right thing by letting him check it out on his own the next day. Hopefully he'll feel better about it now.

Good luck.
posted by christinetheslp at 3:12 PM on October 15, 2007

dirtynumbangelboy, we're still working on getting Gabe to say his own name and realize that it's his name. I know he understands things that we say, but I never know how much. I'm not sure that an idea of a special protective item would get across.

Cool Papa Bell and cacophany's wife, we have a solid, set-in-stone routine. Thank you both for your advice. Mrs. cacophany, by a visual schedule do you mean a physical printed to-do list with photos instead of words? if so, I haven't even considered that, and I will definitely try it.

Pastabagel, can you have a night terror if you don't actually fall asleep? He was completely awake, and I hadn't considered this as an option, because I thought that was something that only happened upon waking from a deep sleep.

Thanks so much - I appreciate your concern.
posted by mitzyjalapeno at 3:15 PM on October 15, 2007

Mrs. cacophany, by a visual schedule do you mean a physical printed to-do list with photos instead of words?

Yes, that's exactly what I mean. For kids who don't have a lot of language, using visuals in the form of pictures, photos or picture symbol system, can be really useful. Some kids use a picture symbol system called Picture Exchange Communication System as a way to communicate. If he's familiar with something like that from school, you could use those symbols. If he's not, I would go with actual photos. You can print simple words next to the pictures if he has some language, or just use the pictures. Get pictures of the different steps to using the bathroom, arrange them in sequence, and either post in the bathroom or bring it in with you. Then reference the visuals as you go through the bathroom routine. It helps to make the routine more concrete and accessible for the kids, which can help them to feel in control and calm.
posted by cacophony at 3:27 PM on October 15, 2007

Could you put an opaque shade (construction paper, heavy canvas fabric, whatever will kill the light coming in) over the window at night? Maybe let him help you cover it up?
posted by LobsterMitten at 4:12 PM on October 15, 2007

This reminds me of something I read in Temple Grandin's book Animals in Translation. Grandin is a high-functioning autistic woman who has designed industry-standard chutes for cattle and other animals, as well as written a number of books that provide deep insight into what it's like to have autism, and how autism is akin to having non-human animals' type of sensory processing. It's precisely because Grandin has autism that she's been able to gain gained so much insight into the way animals react to the environment around them.

With cattle (as with many autistic individuals), little things that most humans don't even notice, such as a bright, dangling strip of plastic, a dark shadow cast by an overhang, or a piece of metal flashing in the wind, can completely captivate or spook them. Grandin writes in Animals in Translation of performing regular maintenance on cattle holding facilities where her chutes have been installed without attention paid to the little details that can freak out cattle.

The cattle won't go into a completely dark, enclosed space, for instance, because they're afraid of losing their footing. Because of the way their vision works, even small shadows can look to them like an insurmountable chasm, and they balk, holding up production lines. So if a fence is leaning just a bit and casts a shadow the wrong direction, for instance, it can hold up an entire production line—and most humans, with normal perception, can't figure out what's wrong.

Even something as simple as litter—a white Styrofoam cup fallen through to a processing room floor, for instance—can completely spook cattle, leaving them unwilling to move forward. (The Styrofoam cup on the production line was one of her examples, in fact—in order to get the line moving again, someone had to go down to the floor and stomp the cup into the dirt, so it turned brown like the rest of the floor. The cattle were fine after that.)

So it is with many autistic individuals—so it's likely that your son saw a bird or something else either silhouetted in the bottom section or clearly through the top section, which he processed as a threat. And unfortunately, he may now expect that it's going to be there—and that expectation may be confirmed every so often, considering things often fly by windows. Not sure what the solution is, since this stimulus is likely to recur on an unpredictable basis...opaque curtains on the bathroom window, perhaps?
posted by limeonaire at 4:28 PM on October 15, 2007

mitzyjalapeno-

Here's the night terror description from NIH. Notice that they usually occur in the first half of sleep, unlike nightmares which occur in early morning. Also, it says they are common for 3-5 year olds.

It also says they occur in deep sleep, however I can tell you that I have had them within 15 minutes of falling asleep in fully lit rooms - so fast that I didn't realize I had fallen asleep until I woke up. In those cases I had stayed up very late but was nonetheless in bed.

They are triggered by being overtired and/or emotionally stressed.

I don't know much (anything) about autistic children and how they respond emotionally to stress. Here is a Austism and Asperger support message board about night terrors and autistic children.

Here is a google books link (pagess 255-256) to the book "How to Live With Autism and Asperger Syndrome" that describes how it presents in autistic children. Thy appear fully awake, may refuse parent's intervention, etc. Like I said, I know zero about autism, but I could write you a set of encyclopedias about how your brain malfunctions during sleep. But a cursory google search of "night terrors" + autism is bringing back the world, so this sounds like something a lot of doctors and other parents will have experience with. I really don't think you're alone.

If you and your boy work with someone regularly like a counselor or a doctor, mention the night terrors.

My experience is don't try to reason with the kid during them. Just keep saying "It's okay, I love you" over and over and over again.

And night terrors are harmless, so don't worry too much. If he was creeping back in to the bathroom the next morning, he's tough.
posted by Pastabagel at 5:34 PM on October 15, 2007

Okay, I reread your comment. If you are certain he was awake, then it was not a night terror, because you have to be asleep for those to start. But what I'm saying is he may have seemed to be awake, talking, moving around, etc. but he may have been completely asleep.

But if you're sure he was awake, then it is something else and you can ignore me, and I would consider what limeonaire wrote. In any case, good luck, and I hope the little guys feels better.
posted by Pastabagel at 5:41 PM on October 15, 2007

I have a background in autism/behavior analysis and I Second Cacophony's wife. Something outside scared him at one point, I would focus on how to help him now. If he is still scared to go to the bathroom on a regular basis you can do a few things (possibly a combination):

*Use Picture symbols for bathroom or set up a schedule. Reinforce him for going to the bathroom.

If it's a little more severe or the above does not work:
*Gradually work him into using the bathroom without being scared by using reinforcers. If he likes skittles, cookies, tin foil, a certain toy, etc.- use this as a reinforcer. Give him the reinforcer when he enters the bathroom. Next time give it to him when he walks to the toilet, then after he goes to the bathroom, etc. etc. Or just increase the length of time he needs to spend in the bathroom (imperceptibly by 5-15 second increments) for a reinforcer everytime. This should associate the bathroom with positive things and take the focus off whatever scared him as well as help him deal with the stimulus on a small scale and grow accostumed to it. Eventually fade these reinforcers and give them to him less and less as he gets more comfortable with the bathroom/window.
*tape a piece of paper over the window or cover it in some way. See if this helps. If it does you can slowly fade away the cover by cutting away (again, imperceptibly) small peices of the cover on the window until it returns to normal.

The key is to gradually increase his exposure to the stimulus (the bathroom, the window, etc.) to help him grow accostumed to it.
posted by bobdylanforever at 7:35 PM on October 15, 2007

i have a similar background as bobdylanforver and completely agree on using reinforcers to gradually increase the time your son is in the bathroom. i would recommend only allowing him access to the reinforcer, whatever it may be, when he is in the bathroom and at no other times. he will be more motivated to 'work for it' (a favorite toy, book, edibles, etc.) this way.

also, i have worked with kiddos who have developed a sensitivity to light and displayed similar behavoir in certain rooms. one little girl developed an aversion to the light above the stove in her house, but allowing her access to certain favorite toys in the kitchen (a place she refused to enter due to the light) gradually diminished this behavior.

good luck with everything.
posted by enaira at 8:14 PM on October 15, 2007

I've always found clerestory and frosted windows a bit unnerving... something about being able to see outside, without being able to see what's outside. Seconding the suggestion of opaque curtains.
posted by teg at 11:20 PM on October 15, 2007

Thank you so much everyone - I am working on the curtain / shade idea, but I've just got to get the cat to stop trying to destroy it.
posted by mitzyjalapeno at 8:06 AM on October 16, 2007

You might find some free help on TalkAutism (click on "HelpWanted"
posted by ac at 11:34 PM on October 17, 2007