You know, when you get together with family and old friends you start to reminisce and tell stories about the good old days? Or you run into an old friend at church or at the store and catch up on what’s going on in their lives. Of course, you do! We all do it. It’s inevitable. It is what people do. It’s a fun bonding experience, however; with Nancy often, these experiences are major triggers for her. Like others on the spectrum, she shows signs of distress before having a meltdown. This is sometimes described as the “rumble stage”. She starts to show signs of anxiety such as becoming very still and then seeks reassurance through repetitive questioning. She is triggered by ordinary things that most people take for granted. They don’t understand and don’t recognize the subtle (and sometimes not so subtle) nuisances and changes in her behavior.
The other day my sister Karen and I got to talking about when we lived in the apartments back in the 80s. I was just a little kid back then and Karen was a teenager so of course we remember things a little differently from one another. There’s one childhood story that sticks with me, but she doesn’t remember at all! It’s probably because she was at volleyball practice or basketball practice or doing some other highschooly thing. Anyway, Grab yourself a beverage and a little snackage. Oaky, are you back? I’m already smiling and shaking my head, listen to this ridiculous story from my childhood.
So, grandma took me to Sears Surplus when I was about seven or eight years old. (Do you remember this 80s store?) She bought me a pair of shiny pink moon boots. Boy, I thought that I was something else! As soon as we got home, I put them on, ran outside, and showed off to all the neighbor kids. “Look how I can walk through puddles and dip my feet in the creek and my feet don’t get wet!” It was such a super-duper cool feeling. Well that feeling only lasted a moment because my friends cynically demanded. “Prove it. Show us how waterproof they are!” (I don’t know, but this “prove it to me” mentality might be because we are from the Show-Me-State.) They dared me to wade into the muddy deep waters of the creek.
I remember being full of bravado. “Duh, of course, they’ll protect my feet when I walk through the creek!” The first couple of steps I was fine but suddenly, I squished really far into the mud. “It’s okay! My feet aren’t even wet! These boots are rad!” Then I took another step and my foot sank even more deeply into the mud. I tried to walk but couldn’t move. I was literally stuck in the mud. To my horror, I discovered that the more I struggled the farther my feet sank into the stinky mud. The boys were on the bank of the creek rolling with laughter. The girls were trying to help me get out of the water. They were reaching a stick out to me and trying to pull me out. I fell over with a splash and panicked. I said a curse word. I pulled my feet out of my boots leaving them in the swirling muddy water. I ran home with my feet sloshing around in my wet socks and tattled on myself, “Mom I said a cuss word!!! And I lost my boots.” Understandably, I got in trouble, but I found out when I was an adult that mom had gotten into trouble from Grandma, “Carolyn, how could she have lost her boots? I just bought them for her!”
Hilarious, right? I’m going to be honest with you, this story was a bit of a rabbit trail. This time, it wasn’t about the subject we were talking about. Nancy didn’t care about my childhood mischief. It was all about the time period we were ruminating about. While we were laughing Nancy came stomping into the room and shared some off-topic thing that happened in the 80s. You see, we triggered her. Whenever this happens, she usually says something weird or brings up some person we haven’t seen or talked to in years. Most often it’s off-topic. There’s something about the time period that triggers her. (*The early 80s were a rough time for our family.) She gets hyper focused. She won’t stop until she is satisfied that we remember what she’s remembering even if we don’t. (Even if I was a baby back then or not even alive yet she expects me to remember!) Most likely it will set her off for the next week or month. She’ll talk about past people, places, or events as if they are here or happening right now. It’s just part of her struggles. If we want to keep our sanity, then we don’t talk about certain subjects around her.
When we go to church, the store, or the post office (anywhere really ?) most likely there will be somebody there that we know from the past who might trigger her. The normal thing would be to stop, chat, and catch up with the person. But we don’t do normal when Nancy is around. It feels rude, but it’s what we do to keep peace. We try to keep Nancy from seeing them, but sometimes it’s unavoidable. The poor person is clueless to our situation. However, she’ll be triggered. Mary Janca, autism self-advocate and high school teacher writes, “An autistic person’s brain is already in hyperdrive when senses come in. Therefore, a change in routine can be enough to tip the scales in sensory input and cause meltdown. It is like a computer that freezes because too many processes are occurring at once.” A couple scenarios will unfold. Either she will shut down and stare blankly or something from the past will be dredged up and then whatever it is, we’ll live like it happened today. Her emotional responses will seem awkward and out of place. Depending on whatever it was, she might think it was funny and laugh, she might be mad and say it hurt her feelings, she might get a “crush” on the person simply because they were nice to her. She’ll FRANTICALLY repeat herself over and over for weeks or even months about the person we ran into.
She seeks reassurance through repetitive questioning.
“So and so’s my friend.”
“They like me.”
“I want to send them a card.”
“When are we sending them a card?”
“So and so’s my friend.”
“They like me, right?”
“Remember when they said…”
“They are my friend, right?”
“Are you going to buy a card?”
Or it could be,
“They are mean.”
“I don’t like them.”
“They didn’t want to talk to me.”
“They hurt my feelings.”
“Do you like them? I don’t!”
“I’m not sending them a card.”
Sometimes, it’s a set of questions like these other times she’s repeating memories. These conditions make our home life incredibly difficult. We, now, attend church online. The hardest thing is that people including church leadership do not understand our situation or Nancy’s behavioral quirks. Owen Kelly, PhD says, “Repetitive questions are a compulsive act done in hopes of reducing the anxiety associated with an obsession. The compulsion often goes up when levels of distress are high and/or when the person feels unable to tolerate uncertainty.”
In long and short term strategies for reducing specific repetitive questions (2000) Beverly Vicker M.S., CCC-SLP writes,
“Possible Functions or Reasons for Repetitive Questioning:
- Inability or difficulty adequately communicating ideas via oral speech. x
- Difficulty knowing how to initiate or maintain a conversation. x
- Lack of other strategies for gaining attention in a positive way. x
- Need for information. x
- Need for reassurance. x
- Need to escape a situation that is boring or unpleasant. x
- Need to avoid transitioning to a new situation. x
- Desire to be social. x
- Need to be in control of the situation and/or attempt to keep the social interaction within his/her level of understanding. x
- Fascination with predictable answers.
- Desire to demonstrate knowledge or competency by content of questions.
- A motor planning problem which makes novel utterances more difficult to produce in affective situation.”
x Nancy does these things
The reasons for repetitive questions often vary so the way I respond should vary, too. Nancy may be repeating the same questions or statements as her churning rushing emotions, environments and situations change around her and within her. It’s my job to figure out what the underlying cause is and what is provoking her to be stuck. Like when I was kiddo stuck in the swirling muddy creek water and my friends reached out a branch to me. Hopefully, the branch I use to fish her out is better than the one that was stretched out to me, but even if it isn’t it’ll be okay. We’ll figure it out together. It’s a learning experience.
Ways to reassure your loved one and not go crazy in the process
- Write her question and the answer down on a sticky note or notebook. Mom always did this, and Nancy wants me to do this, but I often forget. This is a great way to reassure her because she can always look at it or I can read it to her and tell her not to worry because if anything changes, I’ll change the answer on the paper.
- When she is asking about when we are going to do something or when an event will happen, I can use her calendars (She is obsessed with calendars!) This way she can see visually how long she will need to wait.
- Here’s one that I have not used but would be such an asset for someone who struggles with reading and writing. Use technology such as press buttons that a person can press to hear your reply as many times as they would like.
- Set a limit on the number of repetitive questions she is allowed to ask and let them know when you will be free to talk on another topic. Build it into her daily schedule.
- This is one I use often! I will reverse the question to see if she already knows the answer to her own question. (*side note, I also make her repeat tasks back to me. I do this to see if she understands me or if I need to reword what I’m saying.)
- Use calendars, schedule boards, activity charts, chalkboards, and other visuals to reduce anxiety. (I do this, and my house looks like a mini classroom, but it works for her so our house design = classroom chic.)
- Suggest an alternative activity. For us, we have her turn on her tv or listen to her headphones. Sometimes it’s, “hey go get a snack!” She needs a distraction, so we try to find something to shift her focus onto something else.
- Use a checklist. If her questions reflect anxiety about her schedule, then we can check off events until the activity occurs. Mom would do this one with her, too. She loves to check things off or mark her days in her calendar.
- Tell your loved one that you already told her this information, but you would be willing to discuss topics A, B, or C and then let her choose. This method doesn’t work with her, but it may for you. Nancy always circles back or just says what she wanted to in the first place.
- Reduce stress and anxiety by creating stable routines.
- It’s important to discover the real reasons for her questions. Figure out whether it is the question itself that is worrying her or if it is something else. Easing anxiety levels is the best way to deal with repetitive questioning. There could be changes to her daily routine that is upsetting or a new change or event coming up that worries her.