This is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.
H is for Healthcare Access
Healthcare access is a big topic today, thanks to the Affordable Care Act (ACA). I see people commenting often, either grateful for ACA and their newfound healthcare access or angry about ACA and their extra costs or lost access. What often gets lost in the shuffle are those groups that did not have good healthcare access before the ACA and have not been significantly helped by the passing of ACA.
Autistic people have struggled to get our health needs met for a long time and will be struggling with our healthcare access for some time to come. In the wake of the passage of ACA, our voices are often drowned out by the voices of those who say we need 40 hours per week of ABA therapy. All the attention when it comes to our healthcare gets focused on ABA (Google “autistic health care” or “autism ACA” to see what I mean) and our genuine medical needs too often get swept under the rug. Too many of our basic health care needs are not getting met and some aspects of autism make our difficulty accessing health care “invisible” in the public discussions.
As I see it, there are three main reasons why we are such an underserved population: bias against the value of Autistic lives, communication issues, healthcare provider ignorance. And the three solutions are acceptance, accommodation, and awareness/education.
I think most people reading this don’t need to be convinced that Autistic lives have value. But, just in case, I’ll say this: we are human beings. We have thoughts, feelings, desires. We want to be healthy and live long, full lives (even if our life-well-lived doesn’t always look the same as your life-well-lived.) We deserve the same respect, dignity, and chance in life as anyone else.
Doctors don’t always feel that way, though. One example is the case of Mel Baggs who had to fight in 2013 to get a GJ tube — without the tube, Mel would die. And the doctors knew that. And they were trying to encourage Mel to just go home and die. Mel’s case because known on the internet and people from all over the place called the hospital to protest . . . and Mel got the tube and is alive today.
Mel wrote, “But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn’t work on me, even though I was yelling and screaming, they didn’t stop to give me more, they just kept telling me that the Versed meant I wouldn’t remember it later. Yeah right.” – Mel Baggs, Feeding tubes and weird ideas
(More on failed attempts to provide appropriate anesthesia to Autistics in a bit.)
Another example is 23-year-old Autistic Paul Corby who was refused a heart transplant. Paul was in great health except for the left ventricular noncompaction in his heart. There is a long waiting list for hearts – several hundred people die every year while waiting for a heart. But Paul was young, otherwise healthy, and a great candidate for a transplant . . . if only he didn’t have autism. His life was valued so much less than the lives of others that he was not even allowed on the waiting list.
Three years later, Paul is still trying to get on a waiting list for a heart. In the meantime, he has written three novels for young adults. Paul just wants to live, to be able to walk up a few steps without losing his breath and becoming exhausted, to continue to write and play video games and to watch his nephews grow up. His petition nearly has 300,000 signers but still he is not allowed on a waiting list.
These and so many other cases are prime examples of why we need increased autism acceptance. It is wrong for doctors to decide that it is better for someone to die because they have a developmental disability. Yes, there are risks with a feeding tube. Yes, there is a long waiting list for heart transplants. But Mel was willing to take those risks and Paul deserves to be on that list. Transplant lists have triage codes to govern the speed with which people move up the list and it is wrong to not allow Paul on the list at all when he could have at least been sitting on a slow track for the last three years.
Communication issues are another serious barrier to getting healthcare needs met. In the case of non-speaking Autistics, communication issues often revert to barrier of human value — those who do not speak are, quite unfairly, valued less by many people than those who do speak. But those of us who speak are often confronted with communication barriers as well.
Communication barriers include things like rushed appointments in which we are not given sufficient time to process language or in which we are “punished” for “waiting so long to bring that up” when we had been struggling for the whole visit to get the important words out. Communication barriers include things like not being able to focus because of fluorescent lights or not being able to hear the doctor’s words because of clanging medical equipment. We can’t communicate symptoms well if our doctors ask the wrong questions and we have sensory wiring that doesn’t always allow us to know where our pain is or even that we do have pain. Sometimes doctors rush through instructions that are only given orally with no room for processing or remembering the information and no written record to help us recall what we were told. This is usually followed up with, “any questions?”‘ and an overwhelmed and overstimulated Autistic often just says, “no,” because there is not the time and mental space to process everything and make the question words. Communication barriers can be invisible to doctors because we are so compliant that we say everything is good when it isn’t or because we come across as so intelligent that it seems impossible that we could also have significant deficits. Communication barriers can even be invisible to ourselves if we are so overwhelmed that we aren’t even able to know what we don’t know.
Accommodations are the best answer to these sorts of barriers. One accommodation I use is a little digital voice recorder. I ask permission to record the consultation, saying, “my memory is like a sieve. This is just so I will remember what we talked about, okay?” I have not yet had a doctor refuse to allow me to record our visit. Later, I transcribe the recording into a text document because written language is so much easier for me to process than spoken language. I add the transcript to my personal medical file and I can quickly and easily see how long I was supposed to soak a body part for or what I was supposed to eat or not eat with those pills, etc. I also try to come into an appointment with printed out notes or a bullet list whenever possible. Some doctors seem put off by my bringing notes, but it is the only way I can be sure that my needs will be met in such an overwhelming environment.
Cynthia Kim has written a great essay outlining some of the accommodations that will help Autistic people get better access to health care. Many of her points spill over into my third topic: educating healthcare providers about the ways that Autistic people are unusual in a medical setting.
I already mentioned one of those: our unusual responses to pain. Our nervous systems do not respond the way the nervous systems of allistic (non-autistic) people respond. Sometimes a tiny splinter or a gentle bump causes unbearable pain. Sometimes a broken bone doesn’t even register with us. We are both hypersensitive and hyposensitive to pain and one person can be both hyper-and hypo-sensitive, depending on the setting, the injury, what else we are currently coping with processing at the time. Health care professionals need to be very aware that not presenting with pain as a symptom does not necessarily rule out a diagnosis that normally requires pain to be present. And they need to be aware that when we express extreme pain from something that seems like it shouldn’t hurt, we are not being “big babies” we are in genuine pain from a nervous system that is often quite unpredictable and gives us genuine and often intolerable pain in situations that someone else might judge “not painful.”
On top of that, we are sometimes awake during anesthesia. We sometimes remember clearly what transpired during “twilight sleep.” We sometimes under-respond to local anesthesia and are traumatized twice – once by the pain and a second time by health care professionals’ response to our pain. I went without dental care for years because of a dentist who told me to stop screaming. “You don’t want to scare the children, do you?” he said. “But I’m scared!!!” I said. He was pulling out one of my back molars — the ones that have the curved roots and have to be pulled out in several different directions, like a corkscrew. My mouth was not numb. It hurt tremendously (and I have a pretty high pain threshold — I gave birth to an eleven-pound baby with no medication and got up afterward and walked out of the room by myself.) I was scared, I was in pain, and instead of comforting me or discussing further pain or anxiety management options, the dentist chose to shame and humiliate me for an honest and uncontrollable reaction to the situation.
I was not afraid of dentistry before that visit. After that visit, I could not even go to the dentist for a routine check-up or teeth cleaning. Health care providers fail to realize what severe trauma they can cause or what a huge negative impact they can have on a patient’s overall health. And, once again, it is hard to find useful information about autism and dental anesthesia because parent concerns — fear that anesthesia will cause or worsen autism — drown out the actual needs of actually Autistic people.
Education is the answer here. Health care professionals need to be aware of atypical responses to anesthesia and other medications. They need to be aware of issues like touch sensitivity and be educated about the importance of letting Autistic people of all ages know exactly what is going to happen beforehand. Many of us are easily startled. Many of us do not show extreme fear in ways that untrained people are able to recognize. Many of us can have overwhelming levels of panic or pain that medical professionals are unprepared to deal with.
Lynn Soraya has an excellent essay on the Psychology Today Web Site about the difficulty of dealing with health care professionals who do not understand autism. Be sure to check out the pages she links to at the end of her essay (one of which, Cynthia Kim’s, I have already linked in this essay.) So many of us have stories that range from very annoying to outright horror stories about being treated poorly by health care professionals who do not understand our needs or our presentation.
Once again, autism awareness is not sufficient — it can make people feel good about “doing something to help” but it doesn’t actually help. When it comes to our health care needs, Autistic people need better education of healthcare providers, accommodations in the health care setting, and above all we need autism acceptance because we will never get our health needs met until we are fully recognized as deserving of respect and dignity and are widely understood as being valuable — not for what we can do, but for who we are: your brothers and sisters, fellow human beings. Until society is willing to own us as “one of us” instead of a frightening and dehumanized “them,” we will continue to struggle and fight for the basic level of health care so many other people take for granted.