Understanding autism and health care

Dr. Norah Johnson shares her research and personal connection

Dr. Norah Johnson (bottom right) with nursing students volunteering at Head Start Dental Day

In the Illuminating Intellect podcast, Dr. Norah Johnson, associate professor of nursing, talks to Provost Dan Myers about her research into health care for people on the autism spectrum, as well as her interests in running and the theater.

Dr. Myers: You’re very focused on providing care for people on the autism spectrum. Can you tell us a little bit about that?

Dr. Norah Louise Johnson: I have a 21-year-old son with autism so I think my interest is really driven by trying to understand how to care for him when he was young, and then some of my experiences I had in health care setting with him. I’m a nurse and a nurse practitioner. I was able to have some insight into how health care worked, in addition to being a parent of a child with autism accessing health care. What I’ve really came to understand is that autism is a social and communication disorders and repetitive behaviors really is a challenge in health care. Health care is a very fast-paced environment with noise and it’s hard for children with autism because they get anxious in that environment.

Dr. Myers: So people exist on a spectrum with respect to autism. Can you talk about how that plays out?

Dr. Johnson: Since 1994, we started to think of autism as being five different types of disorders ranging from the mild Aspergers to the more severe autism. Then in 2013, again it was recategorized to be a spectrum in it of itself. What it really is, is it’s a social communication disorder and then its repetitive challenging behaviors. Because it’s a spectrum disorder, we have high functioning intellectual individuals who might not have what we call in society appropriate social skills or communication skills. But they are very much able to live independently and have a very high quality of life.

Then there’s the lower end of the spectrum that requires more support and resources. Those children might be nonverbal, not able to do their own personal care, and unable to live independently. So that limits their quality of life and cost to society in terms of caring for them. So that’s the spectrum, what they have in common are these issues with socialization and communication. So if you don’t have an intellectual disability but have a diagnosis for higher functioning autism, can you imagine if someone says they’re trying to find a cure for you.

If you are able to live independently and interesting with a lot to contribute to society, we don’t need to cure you. At our own autism center here, Dr. Amy Van Hecke runs a PEERS program that does a lot of social skill training that can help people reach their highest potential. It’s not necessarily a cure but just looking for proper programming to help people reach their highest level.

Now the parents and family members of children who are severely affected though, sometimes find it troublesome if we say we don’t need a cure. In their mind, they do need a cure because they see their child as not having a good quality of life. We still don’t want to forget that end of the spectrum on the research.

So the children and adults on the more severe end of the spectrum are the ones who really have trouble communicating. They get frustrated, and end up acting out more in terms of challenging behaviors. That really does disrupt the true fruit of healthcare, and ultimately their health. The experiences then for the family members who take them to the health care settings, it can be frustrating, it can be embarrassing, and stigmatizing. And then, what ends up happening is they delay seeking care, sometimes the kids or adults are sicker when they get into the health care system.

Dr. Myers: So the experience with it causes them to avoid engaging with the system then?

Dr. Johnson: We’re starting to understand that health is about prevention, and there’s a lot we can do to keep ourselves healthy. And I’m really interested in family members around children and adults with autism. That’s what I did my dissertation on. I looked at how the stress of parenting was mediated by family functions in terms of parents’ physical and mental health. And we need healthy families in order to have healthy children with autism.

Dr. Myers: Do family members who are not on the spectrum but, do they avoid health care for themselves. Do they become more likely to be sick and not have their problems addressed?

Dr. Johnson: That’s a possibility. We do know sometimes that parents become more vigilant taking care of their children and not caring for their own health needs. But there are specific challenges that the children have, their behaviors that build over time. The lengthy exposure to stress that raises your cortisol level that over time make you prone to health issues. Or prone to other things: not exercising, obesity, all the other things that slowly creep up on you when you’re busy caring for someone with autism.

Dr. Myers: As a health care provider, what are some of the things you can do to mitigate the problems in the environment. Say, just on a typical visit to a primary care physician?

Dr. Johnson: That’s exactly what my research is in. What we find is we can attack it from two different ways. One, we can try to make the environment calmer and train the healthcare providers. And the other thing you can do is equip parents with self management strategies in the form of social story books or apps, which is what I’ve been developing with our colleagues at the department of computer science here. It’s a way of letting children know what is happening to them and how they can socially react. It prepares them in a foreshadowing way, so that they know what to expect. They’ll know that it will be noisy or loud, or that they get to hear or see what the machines will be like. And it’ll end with a reward situation. Then it will end with pictures sounds of going home on this app, so they know they’ll be going home.

Dr. Myers: In those two cluster of things, do you find one of those easier to work with them? Are the parents or the children more likely to invest in this. Do you struggle more with the healthcare providers with preparing the environment?

Dr. Johnson: I think that’s it exactly. When I first started the work, I started to adjust the hospital environment, and then I quickly understood that there were a lot of barriers and a lot of competing interests in the hospital environments, and only so many hours in the day for staff education. A lot of competing items were things that were required for hospital accreditation such as handwashing, and bundling to prevent infections, and readmissions. All worthy areas, but not my particular area of interest given my family situation.

Dr. Myers: And things that bump up against the possibility of them actually adjusting the environment in some way to make it more friendly for people with autism.

Dr. Johnson: Right, because the environment is the exact opposite of the typical hospital environment and the exact opposite of the way many people were trained. We’re trained to do things quickly, to gain compliance, we expect people to socially want to please us and be tough and get through things, which is very different than autism.

Dr. Myers: That’s gotta be a really challenging experience for a kid, in particular. As they get older, are they able to cope more with these kinds of things through experience or is there a maturing process? Does that assist them in coping or being tougher in the environment so that this becomes less of a problem as they age or not?

Dr. Johnson: Sometimes it’s really just the exposure to resources such as applied behavior analysis-type therapies. The children will learn a mechanism of expecting something, seeing it, and being rewarded for it. So it’s a lot of assistance through therapy foreshadowing and experience. I’ve been in many conferences and talked about this a lot in terms of my research. It’s more often than not at how severe someone has autism or how challenging the procedure is, but whether they feel prepared for it or not. We call it immediation, so resources and preparation are the biggest predictors of whether someone can get through something, not just severity.

Dr. Myers: There’s a book I read a few years ago it’s The Curious Incident of the Dog at Night. It’s about a kid who’s on the spectrum. Is that a good representation of the experience that people have?

Dr. Johnson: I did read the book and I haven’t seen the play. The thing about autism — and this is an overused quotation but I’ll say it — “If you know one person with autism, that means you know one person with autism.” The kids are very different but the underlying things they have in common are issues with socialization and communication and repetitiveness and narrowness. What I recall from the book, is this issue of pink and brown food, rigidness with that, and those are some of the symptoms of autism.

Dr. Myers: One of the things that I recall from the book was the main character’s view of the world was very monocular. It was just like he would focus on things like this, instead of being able to process everything else that was going on around it. Is that what it’s like?

Dr. Johnson: I suppose it’s true. It’s very much a narrow focused.

Dr. Myers: I think the author actually was someone who worked with kids on the spectrum. It’s just interesting because sometimes one of the things that’s difficult I think in life is for us to develop the appropriate kind of empathy for people who have different experiences of the world than we do. When someone develops something that helps us do that, it can help us become committed to preparing the environment.

Dr. Johnson: I think that’s probably one of the reasons that my favorite book is Blink by Malcolm Gladwell. It’s that understanding that we all arrive at where we are in our life from different experiences and that shapes our decision making. I’m really fascinated in decision making because in health care, the way you make decisions about how you manage your health is actually more impactful than even some of the things that we have in medical technology. Some of the stuff I’ve been reading lately, it really talks about how we have to help people learn how to make decisions.

Dr. Myers: And that right in the middle of your own research too because you were saying how people experience or encounter this environment then has an impact on decisions they make about their own healthcare.

Dr. Johnson: And it also impacts how healthcare organizations decide to adopt technology or to use evidence based practice that they know exists whether they decide they’re going to put it into practice. Because there’s a lot of good research and interventions that sit in medical journals that never get translated to practice. So I’m fascinated with why people will adopt a new technology or a new intervention versus not. What shapes their decision making in this field of behavioral economics that talks about nudging people towards behavior trusting research and then changing the way their departments work in order to start something new.

Dr. Myers: You are a runner, and I’d love to talk to about people running because I’m a runner myself. You’re pretty extreme, I mean you’ve run 35 marathons. Is that right?

Dr. Johnson: I have, and it’s been over several years. My first marathon was the Milwaukee Marathon back in 1996. And then I ran a lot of local marathons in a quest to qualify for Boston, which I eventually was able to do in October of 2001. And it seemed like not such an important goal anymore because it happened about two weeks after 9/11. So I did go and run Boston in 2002 and I went and ran in the New York City Marathon a year after 9/11. And that was probably one of the most phenomenal experiences I had. There was an opportunity to run in all the different boroughs and I can recall coming over a bridge once and there was a guy with a big flag and I can remember him saying, “Way to go, New Yorkers don’t quit!” That was sort of my mantra from then on. I thought I’ll do one or two of these a year and maybe get to see some parts of the world and see what it’s like. So I went to London, England in 2005 and Berlin in 2012.

Dr. Myers: Do you have a goal of how many you want to try to run?

Dr. Johnson: Well, not so much a goal, I very much enjoy the running with the president’s club here so the opportunity to run the Lakefront Marathon is still on my list. And then there’s this opportunity to run the six world major marathons and I’ve done five of them. I just have Tokyo left, so that’s on my bucket list.

Dr. Myers: I have one friend who’s trying to run one in every state of the United States, and he’s only got three left. He’s hoping to knock them off this year. I’m just so impressed with people like you who that much. I’m a short distance runner, I just do a bit every day so that’s my claim to fame, my running streak.

Dr. Johnson: I saw that in the Journal Sentinel. That’s pretty good!

Dr. Myers: You like to run in a group of people, but for a lot of people it’s a very solitary kind of activity. I’m wondering if it’s a good sport for people on the spectrum. Is it something that they like to do and does it fit well with their way of being in the world?

Dr. Johnson: For certain people on the spectrum, it has been very good. I have some friends in the autism community, we have a run called Dylan’s Run for Autism, and it’s a fundraiser for the Autism Society of Southeastern Wisconsin.

We’re up to about three thousand participants now, many of them are children or teens with autism and their families who run together as a group, and raise money for the Autism Society. It’s one of my favorite days of the year where we all go down to the Summerfest grounds and I’m in charge of the routes, the starts and finish and the permitting for that. And I know that some of the young men and women with autism do participate in cross country teams so I think it is quite a good sport for that.

Dr. Myers: I think it’s a great marriage of physical activity and supporting great cause. I’ve always found the running community to be very charitable and very interested in helping others. It’s a great community.

Dr. Johnson: I do like running with other people. We have a running group in New Berlin that I run with and then I try to run with Running with the President. I like talking while I run so it’s enjoyable.