Life on Repeat: FASD and the need for control, safety and predictability

Written by Rebecca Govan

This summer, we did something bold: we went on holiday. If you read my last blog, you might remember that I’d sworn off travel for life after the last family holiday causing the me to age expedentially. But this time was different. We were staying near my sister and her family, surrounded by love, kindness, and support. That made a huge difference. However none of that means it was easy!

My daughter, who has a diagnosis of FASD (Fetal Alcohol Spectrum Disorder), did surprisingly well with the changes in environment and routine—both of which can be very difficult for people with FASD. But her way of coping with all of this nearly broke me: repetition.

Are we going to the Cowboy Restaurant?

A couple of times a week, we went to a small restaurant across the road. Locals in Stetsons filled the place, and my daughter dubbed it, appropriately “the cowboy restaurant.”

One evening, I told her: “We’re going to the cowboy restaurant for dinner.” Now, sometimes, that would be enough. But for my daughter on that day, the words weren’t real until she could physically see and experience the moment. This is a common challenge with FASD: the brain struggles with prediction and tolerating the uncertainty of “what’s coming next.”

I often describe her mind as a “Now and Next” board. She can manage what’s happening right now, and she can hold on to one thing that’s happening next. Anything beyond that is simply too abstract.

Surviving the glitch

That night, her brain just couldn’t cope with the uncertainty. So she repeated, again and again, in the same monotone voice:

“We’re going to the cowboy restaurant.”

Not 10 times. Not 20. Not even 30.

She said it 60 times in the space of half an hour. I know because I counted just to try and convey to people not used to living with this impacts of this complex and lifelong neuro disability what life can be like for us.

 I tried everything:

• Reassurance.

• Distraction.

• Physical closeness and comfort.

• Calm responses not reliant on too many words (because people with FASD often have a big gap between what they understand and what they can express).

• Echoing her words back.

None of it helped. Nothing made it real for her—until we physically stepped into the restaurant. So the question then is how to survive this kind of brain glitch with your sanity in tact as a care giver? Being able to step away is a choice I was lucky to have, some of us don’t. using ear plugs is a very real and helpful idea, just to bring the volume and sensory strain down, distracting yourself with something low key that might help you to relax and maybe exercising some self-compassion in the moment.

Why This Happens

Bessel van der Kolk, in The Body Keeps the Score, writes about how trauma can lead to children living in a world of action and this resonates for my daughter even when her primary presenting need is her FASD. For my daughter, things are only real when she can viscerally experience them. Without that, she’s stuck in a loop of needing certainty that she can’t quite grasp.

Her echolalia (repeating words or sentences) is often connected to joy—things she looks forward to, parts of her routine, or happy moments. But in times like this, it becomes extreme. Until the “what is coming next” happens, there’s nothing we can do but wait.

Attempts at authentic connection

I want to be honest here: it’s exhausting. Listening to the same phrase again and again and again can be incredibly tough. It leaves little room for authentic communication, for the kind of verbal connection I long to have with my child.

That doesn’t mean there aren’t moments of connection—we are trying to create them in other ways. But caregivers need to be real about the impact this has. It’s draining, and we need breaks too and all to often that is not happening. Supporting someone with FASD requires patience, creativity, and most importantly, community.

No Easy Answers

This isn’t a blog with a neat list of coping strategies. It’s not “Five Ways to Handle Repetition.” It’s simply my truth: it’s tough, and if you’re living this too, I get it.

If you’re navigating similar challenges, please know you’re not alone. And if you want to explore support, coaching, or training around FASD—for yourself or for the people you care for— or if you are a professional looking for development in this area please reach out to Anna Webster and myself here or at anna@neurowise.org .