Abstract
I'm in the waiting room of my health center waiting to see the practice nurse for a blood pressure check. The room is crowded, a radio is playing loudly, and the light hurts my eyes. A door slams. Periodically, there is a sharp buzz of the electronic “next patient” display. I look at an “autism aware” sign on a notice board opposite me. Given this pronouncement, I wonder why they can't implement some simple changes to make the waiting room experience for autistic patients less stressful. The door slams again and the key in my back turns another ninety degrees. I know that this isn't doing my blood pressure any good.
I think of the research reports about barriers to health care for autistic people I have been reading lately. The research I have been looking at goes back at least 10 years, for example, Nicolaidis et al. 1 Discovering this body of literature was a revelation for me. It had never entered my head that what I had been experiencing for decades were “barriers to healthcare.” I just thought, as with other areas of my life, my difficulties engaging with health care professionals were about my idiosyncrasies. Difficulties such as extreme susceptibility to sensory overload. Imagine my relief when, as a very late diagnosis, autistic senior, I discovered research outcomes that have helped me reframe these negative experiences. Reading the research papers, produced through community-based participatory research, and led by mostly autistic researchers and autistic clinicians, has made me question how I have managed to survive into my late 60s!
Waiting for my name to appear on the electronic screen, I wonder when the changes to primary health care provision for autistic patients recommended by Clair Haydon et al., 2 for example, will arrive in my health center. Changes such as separate, quiet waiting areas, low intensity lighting, noise reduction, and appointments at each end of the day to avoid crowds. In the meantime, I tell myself, I will have to carry on with the coping strategies I have developed over the years through trial and error. Today, I am wearing noise reducing headphones and light reactive spectacles, and I am avoiding eye contact with other patients by playing chess on my phone. This helps a little; however, I am still stressed about my imminent blood pressure check.
I look at the other people in the waiting room. I can't help but think that making some reasonable adjustments could be of benefit to other patients just as stressed as I am, autistic or not. I look back at the “autism aware” sign and wonder whether, because I am autistic, I warrant any more consideration than other people. I've got this far on my own, haven't I? A younger, assertive autistic person would say, “Yes, you have a right to ‘reasonable adjustment’ that is enshrined in UK law in the form of the Equality Act (2010).” 3 But, somehow, I don't feel like I do. Maybe it's because of a lifetime spent coping on my own. Maybe it's too late for me, maybe I don't want to be any trouble.
Do I require any more help with accessing health services than perhaps a refugee or asylum seeker, a woman of color, or a person experiencing mental health difficulties? We are all marginalized in our different ways. I would be the first to argue that people from other peripheralized groups should benefit from reasonable adjustment in health service delivery. But does a slamming door really justify me asking that the fire closure mechanism be adjusted? Could the radio be turned down? And could my name just flash on the electronic announcement please, why the need for the buzz? These adjustments sound reasonable to me. But how would I even start to negotiate them?
The starting point for any negotiation, I have learned, is being clear about one's rights. For an autistic senior with a very late diagnosis, this clarity doesn't happen overnight. Despite my advanced years, I am still in the foothills of my new autistic identity. So if I am reluctant to speak up for myself, does this put the onus on health care professionals to pay attention to my needs? I know the system is aware I'm autistic, but do the staff who come into daily contact with me know? If not, is it my place to tell them? Harper et al. 4 urge healthcare providers to take responsibility and be proactive in making reasonable adjustments. But there is clearly a gap between any research recommendations and my experience in this waiting room.
The practice nurse appears and calls my name. Christopher Jarrell. (So maybe we could simply switch the buzzer off—that could be a start, I think.) I follow her to the treatment room. She tells me to take a seat and asks if I am Christopher Jarrell, checks my date of birth and states that I am here for a blood pressure check. I think, “So far so good.” I was expecting those questions. This is how consultations always start. The nurse sets the scene, and I sit quietly as a passive recipient. But I wonder if she has noticed the word “autism” on my profile. “Probably not,” I think. I feel resigned as I anticipate the next 5 minutes playing out in the usual way.
She takes a reading and tells me that my blood pressure is high. I resist the temptation to say, “It will be! I am stressed out by my waiting room experience.” We wait so that she can re-take the reading after the prescribed gap between readings. “Please don't try and make small talk,” I think. “That will just increase my stress!” After a second reading, my result remains high, and she says that it looks like I will need to have my medication increased. She asks if I can make an appointment to see the General Practitioner. It's at this point that I try and explain why I think my blood pressure is high. It's an explanation that I have rehearsed many times before this appointment, an explanation that has been developed and refined after a period of trial and error over many appointments.
“I get very stressed before medical consultations, and stress affects my blood pressure,” I say. I don't tell her that I am autistic and how stressful my waiting room experience has been. I don't want to be confrontational. Instead, I tell her that what I would like to do is go home and take a series of readings over a number of days. The GP can then assess my blood pressure recorded in an environment that is relaxed and conducive to an accurate reading. The practice nurse agrees to this, and I am relieved that my proposal has been accepted. I have avoided a potential increase in my blood pressure medication because of an atypical reading. I wonder, not for the first time, why this arrangement has not been recorded on my profile, or maybe it has, and she hasn't noticed. Taking blood pressure readings at home seems like a reasonable adjustment to me.
I have learned to manage this kind of situation as best I can over the years. But I know that for many other autistic people, these kinds of situations can be overwhelming. My autistic friend missed out on taking his antidepressant medication for over a week because of a mix up over medication renewal before a long bank holiday weekend. He was reluctant to reach out for help and so, not surprisingly, he started to become ill. Doherty et al. 5 have shown that many autistic people don't seek medical help when they need it, or live with untreated long-term health conditions, or sometimes die early because they are excluded by inflexible health care provision Fortunately, my friend dug deep and found the confidence to go back to his GP and restart his medication.
I think I have been fortunate as well. My professional training as a nurse to work with people with learning disabilities in the 1970s, and my subsequent work in hospitals and the community, has given me a degree of health literacy. I appreciate that there have been many advances in health care over the decades, but the fundamentals remain the same. And the simple fact of being an older man with life experience provides me with a degree of assertiveness. Plus, I can afford to buy a blood pressure meter to use at home. Many out of work autistic people cannot.
Today, during my blood pressure check, I have felt assertive enough to speak up and the nurse has listened to me. But you may be asking why I didn't just say something up front before the first blood pressure reading was taken? That's a good question. I didn't speak up because I didn't feel confident enough. Health care professionals are trained to be task orientated. I knew the practice nurse would be focused on the task of checking my blood pressure and this priority would set the scene for the consultation. For a patient to cut across this dynamic requires confidence and skill; so I felt that I needed permission to speak up, either from the practice nurse herself or from the way that the consultation was structured. In my view, the practice nurse's script should have included a way of identifying that I am autistic, and that I have a history of atypical blood pressure readings. But how can I even start to make this happen?
I think that a primary health care passport, such as those currently being developed in secondary health care settings, 6 would be a good place to start. Of all the changes that are in the pipeline for primary health care, a passport would enable health care professionals and autistic patients to sit down together and plan the care that is needed. Sitting down together is important. A joint enterprise wherein we could, for example, record my strategy for home blood pressure readings, and then, hopefully, I could draw the practice nurse's attention to the existence of a health passport in a nonconfrontational way at the start of a consultation. Even better, primary health care professionals' training should include checking for the existence of a passport. Instead of the familiar two questions, there could be three. “Is your name Christopher Jarrell? What is your date of birth? Do you have a health passport? Yes? OK then, let's take a look.”
I don't know how to begin to negotiate a health passport with my health center. And how long will it be before they call me in to discuss a health passport because of a change in policy? Weeks? Months? Years? In the meantime, how can I justify taking up time to explain the concept of a health passport (assuming they haven't heard of them) and to negotiate a suitable format (assuming that the NHS has not produced a passport proforma for primary care). And anyway, I'm not sure the onus should be on me to do this, even though I appreciate that health practitioners are time-poor, overloaded, and practicing within an under-resourced health service. So as I head toward old age, I will continue to employ my coping strategies as best I can, and for as long as I am able. Maybe things will be different for future generations of older autistic people. But as far as I am concerned, I am still waiting for my passport to healthy aging to arrive.