This is a summary of published research in the journal: Journal of PeriAnesthesia Nursing. It summarizes the research and the researchers’ findings and conclusions. As information for our audience, it is not intended as an endorsement or a claim that the research findings are definitive.
The title of this study uses person-first wording (“living with autism”), which does not reflect Think Sensory’s preference or the autistic community’s preference for identity-first language. We have kept the title as published because accurate citation matters and we cannot misrepresent the original work.
This is what researchers call an evidence-based practice project, which means a team of hospital staff used existing research to design a real-world program, then tested whether it worked in their own hospital. It was done at Children’s Wisconsin, a pediatric hospital in Milwaukee, and just published in the Journal of PeriAnesthesia Nursing.
This hospital takes care of about 900 autistic kids in their surgical unit every year. Their staff kept saying they felt like they were “winging it,” just reacting to problems as they came up instead of being prepared ahead of time.
Their goal was to figure out if creating an individualized coping plan for each autistic child, saved in the hospital’s digital chart system, would actually make things safer and more comfortable for the child, and make families feel more supported.
What They Did
The team used a framework called the Iowa Model, which is a structured way for healthcare teams to apply research findings to real practice. They searched multiple research databases for studies about autism and surgery, starting with 33 articles and narrowing it down to 11 that directly applied to what they wanted to do.
The research told them a few things pretty clearly. Coping plans help. Environmental changes help. Families need to be treated as the experts on their own child. Staff need training. And EVERYONE on the care team needs to actually SEE and USE the plan for it to matter.
Based on this, they built their “Let’s Cope Together” program.
How It Works
They started with a pilot phase. Staff would search the surgery schedule for upcoming autistic patients, then call the family and offer to make a coping plan for the day of surgery. Families were often hesitant at first but warmed up quickly. One mom said they were “covering items that health care providers need to ask but usually do not.”
The plan gets built through a set of specific questions covering things like how the child communicates, how they communicate pain, what their favorite things are, what upsets them, how they respond when upset, what comforts them, whether they have any safety-related behaviors (like bolting or self-injury), light preferences, whether they want parents with them in recovery, how they best take medicine, and anything else the parent wants the team to know.
Once the plan is written, it gets saved in the child’s digital chart and shared with the care team before the day of surgery. On the surgery day, a sign with the program logo goes on the child’s door, a printed copy on bright green paper goes in the physical chart, and a pop-up reminder appears on the computer screen when any staff member opens the child’s chart.
All of this is designed to make sure everyone interacting with the child has seen the plan first.
What Changed for the Kids
The team made a lot of changes to how surgery day actually runs for autistic kids.
Some examples:
- Kids get scheduled as the first surgery of the day when possible, to minimize waiting.
- Arrival times got moved from 90 minutes before surgery to 60 minutes before, again to cut wait time.
- The child doesn’t have to change into a hospital gown.
- They don’t have to have routine vital signs taken if it would be distressing.
- They can walk or ride a wheelchair into the operating room instead of being carried.
- Lights get dimmed during the process of going to sleep.
- The number of people in the room is kept to the safe minimum.
- Parents and child life specialists can sometimes come into the operating room during induction.
- In recovery, the child gets a quiet space with dim lights.
- IVs and monitors come off as soon as it’s safe.
- Parents are there when the child wakes up, with familiar items like a weighted blanket, music, or even a therapy dog.
The team also got funding to buy a Vecta sensory station, tablets, floor mats, and distraction items to support kids during their visit.
What They Found
In the pilot phase, they made coping plans for about 60 percent of the autistic kids having surgery. The problem was that making a separate phone call to families just for the coping plan was adding too much work. So they changed the process.
Instead of a separate call, they built the coping plan questions into the regular preoperative phone call that ALL surgery patients get anyway. This one change was huge. Their completion rate jumped to 80-90 percent. Some families still declined, usually because they felt short on time or felt their child didn’t need it, and occasionally a patient got missed.
Staff and providers quickly got on board. They said the plans helped the kids AND helped them as care team members. Families gave positive feedback on postop phone calls. One mom posted on social media that her daughter “was so comfortable with the staff, she was wheeled to surgery like she was going off with her best friends.”
The program was successful enough that the hospital expanded it to their cardiac cath lab, their imaging department, and their outpatient surgery center. The outpatient surgery center has kept their completion rate above 90 percent. The data they gathered was even used to justify hiring a child life specialist at the outpatient site.
Authors’ Conclusions
Their main takeaway: building an individualized coping plan for each autistic child is doable when it gets folded into existing workflows rather than added on top.
The key pieces are
- early identification of the patient
- getting the family’s input (they know their child best)
- saving the plan somewhere everyone can actually see it
- and making environmental changes to match what the child needs.
They also pointed out that many of the accommodations they used (like adjusting lighting, letting kids wear their own clothes, skipping unnecessary vital signs) were easy and low cost. Others, like changing arrival times or scheduling autistic kids as first cases, took more coordination but were still doable.
The team noted that the operating room itself is the one place where they had the hardest time making environmental changes. Noise and lighting there are harder to adjust. That’s on their list for future work.
They also mentioned that many kids who aren’t autistic would also benefit from coping plans like this, and they’re considering whether to expand the program beyond autism if resources allow.
Study Strengths
This evidence-based practice project grounded its work in a structured, established framework (the Iowa Model) and a literature review that narrowed 33 articles to 11 directly relevant studies before any program design began. That methodological foundation gave the team a clear path from research findings into real-world practice, rather than relying on ad hoc problem-solving. Family input was central from the start, with parents treated as the experts on their own child rather than a secondary information source.
The program design itself was iterative, which allowed the team to identify and fix a major workflow barrier mid-implementation. By folding the coping plan questions into the existing preoperative phone call rather than running a separate call, completion rates jumped from about 60 percent to 80-90 percent. That kind of responsiveness to real-world friction is part of what made the program sustainable.
Implementation involved a multidisciplinary team of nurses, child life specialists, physicians, and leadership, and used multiple visual cues across systems (door signs, bright green chart inserts, and EHR pop-ups) to make sure every team member encountering the child had seen the plan first. The program was successful enough that it has been expanded into three additional clinical settings, with the outpatient surgery site sustaining above 90 percent completion.
Study Limitations
The outcome measures were mostly about whether the program was being used (completion rates, documentation rates) and general satisfaction from families and staff. They didn’t measure things like reduced sedation, fewer behavior escalations, shorter procedure times, or other hard clinical outcomes.
Feedback came mostly from anecdotal comments and post-op phone calls, but the feedback from staff and families was positive.
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Editorial Commentary
First of all, this is just FREAKING AWESOME! This is a concrete example of what respectful, individualized care for autistic kids can actually look like in a medical setting. Too often, autistic children and their families walk into medical environments that were built for neurotypical patients and told to just cope.
They’ve totally flipped that on it’s head and shown that individualized care is doable and leads to better experiences for all involved including the medical team.
It treats the family as the expert on their own child and adjusts the system to fit the child, NOT the other way around.
Second, the accommodations that made the biggest difference weren’t expensive or complicated. Dim lights, shorter wait times, skipping the hospital gown, letting a child walk into the OR instead of being carried. Having parents present during the scariest moments. These are small accommodations that cost almost nothing but can completely change a child’s experience!
Third, the biggest barrier wasn’t medical, it was workflow. The plan only started working well when they stopped asking families to do something extra and instead built it into a phone call that was already happening. That’s an important insight for any program trying to make care more accessible. The easier it is to use, the more it gets used.
Fourth, this is a strong example of what happens when frontline staff are listened to. The whole thing started because nurses and child life specialists kept saying “we need better information before these kids show up.” Leadership took that seriously and gave them the resources and permission to build something.
And finally, the fact that this program is now expanding to other medical settings, and that the team is even considering offering it to non-autistic kids who would also benefit, points to something important: individualized, sensory-aware care helps EVERYONE!
A note on the title language: the study uses person-first wording (“living with autism”), which doesn’t reflect Think Sensory’s preference or the autistic community’s preference for identity-first language. We’ve kept the title as published because accurate citation matters and we can’t misrepresent the original work, but the conversation about how this gets framed belongs in the discourse.
A note on the wider context of language use in medical journals: Medical and nursing journals like the Journal of PeriAnesthesia Nursing typically follow the AMA Manual of Style, which still leans person-first as a default. The APA updated their guidance in 2020 to allow identity-first based on community preference, but many medical and nursing publications haven’t caught up. Authors submitting to these journals often face peer reviewers or copy editors pushing back toward person-first, and some writers report having their language changed in editing. So when we see person-first wording in a study like this, the researchers may have tried for identity-first and faced editorial pushback. We can’t know for certain in any individual case, but the pattern across medical publishing is systemic, and that’s a space that absolutely needs to change.
From our end, we’ll keep sharing research that’s consequential for our audience even when the wording isn’t perfect, while doing our best in our own captions to use neurodiversity-affirming language. We hope to see medical and nursing journals catch up sooner rather than later.
Sp, bravo Children’s Wisconsin! Really enjoyed reading this one.
This kind of program shouldn’t be rare. It should be everywhere and for all ages.