Last week’s article discussed some of the ways parents of children on the spectrum can prepare for a hospital stay with minimal stress. This week Lydia Wayman discusses her personal experience with this topic and strategies that have helped her as an autistic adult. Lydia is a writer, speaker, and advocate who encourages people to see greatness in others not despite our differences but because of them. She speaks to parents and professionals at autism conferences and other events about many facets of autism, including the practical challenges of medical care. She answered several questions about her personal experiences with a complicated medical condition and navigating hospitals as an autistic adult.
Can you explain the nature of the medical issues you’ve experienced and what kinds of encounters with medical professionals you’ve had?
I currently have a clinical diagnosis–based on symptoms without genetic proof–of mitochondrial disease. I recently had advanced genetic testing, and they found a “suspicious” gene mutation that has never been seen before, so that’s interesting, but still not a true answer. It’s hard not having a precise diagnosis, and what I say depends on who is asking and why they’re asking.
Whatever the cause, I have a progressive, systemic (whole-body) condition. I developed type 1 diabetes at age three and now use an insulin pump. My autonomic nervous system, which regulates all that stuff you don’t have to think about, doesn’t regulate well. My GI system is paralyzed, so I eat by feeding tube and now have a permanent ileostomy since my colon became affected. My blood pressure can be very low and heart rate very high. I am unable to sweat, so I overheat easily and then my body responds with an allergic reaction. My muscles are tight and often spasm, and the signal from nerves to muscles is faulty, so I’ve been having fine motor issues. I have a central line for IV fluids and medications. I’ve had a chronic migraine for a year, hypothyroid, fragile skin, weak eye muscles (they go two different ways), heart arrhythmias… and I still have a lot of mysteries.
All told, it’s been roughly 30 hospital admissions–many more ER visits, but I can’t guess. I have outpatient visits, and my specialist is in Atlanta (I’m in Pittsburgh). I have home palliative care twice per week, and finally, after three years of trying, I’m starting services that provide support at home. This is great news, because after 15 months in a nursing home, I’m thrilled to feel safe AND stay at home!
What are some of the conflicts you have experienced due to a medical professional’s lack of understanding of autism or of your specific needs?
They don’t understand that autism isn’t just about social and communication issues (and they don’t understand even when those issues happen!). I seem to feel my body differently than most people. I’m very sensitive to changes, but not as good at explaining it so someone else understands. Just last week, the ER was very determined to send me home because they said I wasn’t really sick, but I was positive I had a central line infection, which is a really scary thing. There is quite a gap between “you’re fine, go home” and “I’m headed for sepsis.” My body wasn’t showing them the signs they usually associate with an infection in the blood. I couldn’t really say how I felt, but I knew the pattern. I told them that this has happened twice before and it’s a pattern that has only ever happened with a central line infection. I was trying to show them how things lined up, but most patients don’t provide data to figure out they’re super sick, and I didn’t “look sick” or look like I was in enough pain to be taken seriously.
What advice do you have for remedying some of these issues? Do you have advice for autistics on how to communicate their needs to a doctor or a nurse?
If possible, my mom comes with me to help “translate.” I often have trouble answering questions as fast as they want to ask them. I know the information, but if they ask me in a way I’m not expecting, I get stuck. I have paperwork signed so that she can make calls and basically do anything I can do. I also recommend using the communication strategies that work best. For me, it’s writing, so I have questions or a note typed on my iPad. I also have things like my med list typed. When I don’t have to say some of that repetitive stuff, I do better when I do need to answer verbally. I have a half sheet of paper with a bulleted list of my autism traits that may be important for them to know in the hospital. I also take photos of the mystery medical things that happen. I fight every single admission over them insisting I could not be allergic to this tape or that–I had to use the tape and then prove the reactions every time! Photos fixed that!
You recently spoke about this topic at OCALICON (a national autism and disabilities conference). Can you briefly summarize your main message and how it was received?
I spoke with my friend and mentor and fellow medical-adventurer Sondra Williams about advocacy in the medical setting. We talked about issues related to communication, sensory, social/emotional, and self-advocacy needs. We shared examples of good and bad ways doctors have handled these things from our experiences, and we shared some strategies. It was the very last session of the conference, so we had a smaller audience, but there was a group of teens on the spectrum who were really engaged. There was also a social worker who is involved with an autism-friendly clinic, and I’ve been working with her. She’s using her connections to try to help me sort out some of my issues, and I’m working on finding some written resources for her. It’s such an important topic, and I finally got a chance to advocate in a planned way and not in the middle of the night at the ER when I’m just trying to get through it all.
What can parents do to help prepare a doctor or hospital to accommodate for their child’s needs? Can you give examples of what you (or a caregiver) have done in the past that you thought were successful?
It’s not so different from preparing for any new situation. Introduce the idea ahead of time. Use visuals, and it’s even better if someone in the family has an old stethoscope or blood pressure cuff–let the child check it out. Try a Social Story, visual schedule, read a book.
One really, really important thing is making sure the child can access his preferred method of communication at all times. If that means the child needs some new words (whether speaking them, signing them, or in a device), then work on that in advance. One mother in the audience at OCALICON told us that she worked with her son on the pain scale (1-10) from the time he was little so she knew he could do it when the time came.
In the hospital, Child Life can be a great resource. Their job is to help kids to cope and still get to be kids while in the hospital. If your child is over-age, they still may be helpful. My mom and I want to reach out to Child Life at my main hospital… I’m a young adult, but in a lot of ways, that would really be the most appropriate means of support for me since there is nothing like that for adults (and that absolutely has to change).
Also prepare on the other side–the doctor and staff. Make sure you have a good relationship with your pediatrician or primary care doctor. If not, keep looking, because that’s crucial. Ask if you can visit any new offices and meet the doctors with your child. Let the office staff know if you have concerns or specific needs. That probably means brainstorming and planning ahead, but often, people don’t help because they don’t know how. Don’t just tell them the diagnosis… tell them what that individual may struggle with and how to best provide support in the specific setting.
Have you experienced issues after nursing or doctor shift changes? How do you ensure continuity of care?
I get anxious when a nurse I haven’t met comes to my room. I have a way of doing everything, and I like to do it myself, even in the hospital. It’s stressful until I know a nurse isn’t going to force their way of doing something on me if their way could hurt my body. But I can also be rigid without a medical reason. I’ve been working on that… I ask myself whether it’s a need or a moment of being stuck. It’s hard not to say, “But the last ten nurses haven’t had a problem with it!” I know most nurses who are rule-bound just want to keep patients safe (I think I’d be that way if I were a nurse). I try to focus on a solution that works for both of us instead of focusing on demanding my way. Maybe there’s an equally-okay way to do it. At this point, my mind thinks all of those things, but the language doesn’t come easily, so it’s hard to get it out of my mouth. I still get flustered and frustrated, but “maybe there’s another way” is still huge progress.
What are some of the sensory issues encountered in a medical office or hospital environment?
Everything! I tend to be a really tough cookie about medical procedures, but I refuse hospital gowns unless it’s surgery (I like a snug bottom layer–they are NOT snug), I can’t stand masks, and I really lose it if I’m touched by more than one person at a time. I was just in the hospital and had some pretty uncomfortable things happening the first day or two. I was fine until I wanted a clean shirt, and the lines and tubes had me tied into mine, so I got kind of disheveled. I had to wait a bit for the nurse to help me. The medical stuff was fine, but that was the breaking point for me–a twisted shirt.
Some of my tricks: I always bring earplugs and headphones for admissions in case it’s too loud. I always wear my own clothes. I bring my weighted lap pad from home–it’s easier to carry than the blanket. I bring my Snug Vest, so if I do have to wear a gown, I can still get some deep pressure. I always have a favorite fidget or two with me. There are some procedures most people tolerate that I can’t get through without sedation, and I have a good relationship with the interventional radiology department (they do things like central lines and feeding tubes, so I’m there for procedures a lot), and they ask every time I need to go in whether I need sedation or not.
There’s one particularly great doctor who has a nephew with Asperger’s who is my age. I was anxious about a procedure, and this doctor told me cat stories throughout (I love cats!). He tells me exactly what he’s doing, and he understands that things like my face getting covered by the drape are really uncomfortable for me and need to be fixed. I’ll allow him to do more without anesthesia.
The last trick is that I know how to silence the IV pump when it alarms until the nurse can come.
Is there any way to screen doctors, hospitals, or medical offices prior to a visit? What factors should autistic individuals and/or their families consider?
Good care is often about the fit between patient and doctor. I suggest thinking of several traits that matter most to you and then talking to other families, the office staff, or the doctor himself to get an idea of whether those needs are the doctor’s strengths. When I have a sense of connection with the doctor, those informal conversations help them get to know my style, and I worry less about breakdowns in communication. It’s crucial for me that a doctor is okay with my mom being very involved, because I’m not ready at this point to manage it all on my own. If I ever hear, “You’re an adult, it’s up to you, not your mom,” then that isn’t going to work. Also, some of the people on my home-based care team are more than happy to text with me instead of calling every time–that takes away so much of the stress!
What kinds of communication difficulties have you experienced or misunderstandings that diminished the level of care you received?
A few years ago, I was shocked to find out that some of my doctors believed that I was making myself sick on purpose. This radically changed my life for many months. I had absolutely no idea why they thought it was purposeful when I was as scared and confused as I was. Not being believed was terrifying.
I understand more now about why they were suspicious. I had strange issues that well-known doctors had never seen and couldn’t understand. I’m kind of like the Princess and the Pea… I feel very subtle changes, often before they become clear on testing, but sometimes I’m not very good at communicating it. Doctors are suspicious when I say, “Well, my back hurts or maybe my stomach?” or when I get stuck on a loop of saying “something’s wrong!” and it looks like pure anxiety, but it’s real pain that I can’t place. My communication style is as straightforward as it gets, which sometimes makes people think I must be hiding something. I knew a lot about the medical issues I had and many others, and I liked talking about it.
It took a long time, but I was finally able to see from their perspective. I typed some very simple statements that finally let others see my perspective, too. For example, I said that I learn about the medical things because it helps me to deal with the fear. I talk about it because it’s been one of my big interests throughout my life, long before I got sick. I’m not happy in the hospital because I’m happy to be sick–I’m happy because if I mope and cry, I’m really the one who suffers. I had no idea those things weren’t obvious and had to be put into words like that.
I have a ton of anxiety about new doctors. Now my mom comes with me and helps to translate and fill in the blanks in my answers. We’re picky about choosing any long-term providers, because they have to learn to treat my wacky body and to understand my way of communicating. They have to enjoy a challenge and not recite from textbooks. They have to have a fun side and understand why someone might still be smiling in the hospital.
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