How Doctors Can Treat Disabled & Autistic Patients Better
By Tiffany Joseph, Bened Life Neurodiversity and Disability Consultant
I have had many – too many – terrible or traumatic experiences with people in the medical profession. Fortunately, they haven't all been bad. In fact, some were stellar and are responsible for a drastic improvement in my life today.
Drawing from that experience, I’m presenting the five most important ways to make medical interactions positive for Autistic people. But first a little backstory.
Medical Trauma: “It’s All in Your Head”
Medical trauma can result from physicians and medical staff gaslighting or not believing the patient’s experiences or trusting they know their own bodies. It can come from medical professionals performing procedures, medicating for misdiagnosed conditions, or generally not listening to the patients’ needs. It is caused by being ignored or told that what you’re feeling isn’t real.
One of the most egregious cases of me being given the common phrase, “It’s all in your head”, happened in my early 30’s. I was having a lot of weird signs and symptoms related to apparent nerve damage or some form of damage to the lining of nerves. My symptoms were actually in my head.
My doctor at that time sent me to a psychologist for what I later learned was “health anxiety,” otherwise known as hypochondria. I learned that my doctor did not believe I was actually feeling burning and the sensation of someone was pouring warm water down my calves. Occasionally, I would be holding something and suddenly my arm would throw it down. I was having electrical feelings throughout my body, some of which were painful. Apparently, having that many things going wrong (with no cause that this doctor could discern) meant I wasn’t actually feeling them.
Good Doctors Listen & Advocate
So, that was amongst the worst scenarios of medical staff not treating Autistic and Disabled patients well. Fortunately, they haven't all been bad. In fact, some were great and are responsible for the drastic improvement in my life today. So, I will share about one of the BEST medical experiences I have ever had. It was a few years after I had been sent away to see a psychologist to deal with my so-called health anxiety.
I had since been very careful choosing my primary care providers (PCPs) because, despite starting to see a therapist weekly, I still was having a greater and greater constellation of symptoms on top of what I was feeling before.
On one particular visit, I was frustrated from having more odd things happening to me: I was blanking out or feeling like I was leaving my body. I was still throwing things, causing embarrassing incidents in stores. I felt a burning, stinging pain throughout the left side of my face and neck.
I told the new PCP what my symptoms were and to my shock, she thought of many differential diagnoses. She then made sure to discuss with me in plain language without being condescending what each was and how I could be tested for it.
One thing that really made me feel like I was being taken seriously was when she actually ordered all of the tests she discussed and even sent a note to the neurologist who had previously blown me off. In fact, the note to my neurologist was the most important part of the visit. It made them listen because it was a list from a fellow professional of their mutual patient.
The neurologist had initially disbelieved me and refused to order those tests when I relied on myself as a witness. My PCP believed me, leading to the brain scan that immediately backed up everything I had been saying. We patients have to be believed before we can get to the verifiable measurements that can’t be doubted. No one should have to wait so long for the proper tests.
Providing Care for Autistic Patients
If one is in the medical field, how can they make visits positive and helpful for Autistic individuals and their families? Here are the five most important ways a medical professional can make medical interactions positive for Autistic people based on my personal experiences:
1. Believe the patient’s experiences & feelings
This may seem obvious, but with most minorities, it is the opposite of what happens on a daily basis in these medical interactions. Autistic and invisibly Disabled people are told that they can’t be good witnesses for their own bodies and experiences. If a doctor cannot find a reason for the pain, they assume it isn’t there because none of their tools can measure it.
2. Speak directly to the patient
Every medical professional who comes in contact with a Disabled person should assume that, just like their non-disabled clientele, their Disabled patients can understand and make decisions for their own care, whether they can talk or not.
Their families and caregivers should also be believed in knowing their loved one. However, their opinions and requests do not and should never be allowed to supersede the patient’s ideas for themselves. This includes those who are nonspeaking.
Speaking directly to the patient allows the provider to include the patient and even gauge the patient’s expressions or body language. Although it may seem subtle, it makes space for more participation, buy-in, and consent in the process.
3. Understand what is autism vs. a treatable co-occurring condition
Many health conditions are prevalent in Autistic and neurodivergent people. Many of these are treatable and should be treated. One of the reasons it is so easy for medical professionals to blow off Autistic people and their families is because so many co-occurring conditions are seen as being a part of autism itself.
4. Explain everything in plain language without condescension
It’s important to presume competence. If you are new to this community, it is a common refrain. This means that if you can’t tell if someone is understanding or not, presume that they do and speak to the patient like they do. Don’t speak to them as if they are children or can’t understand adult concepts.
However, don’t use words that require a high level of education to understand, because most Disabled and Autistic people are under-educated below their ability. Society writ large generally doesn’t presume competence and critical thinking ability in those who appear or behave differently. Many are simply denied their basic human rights to a full education.
5. Do your due diagnostic diligence
It shouldn’t have to be said, but in the cases of medical visits for Autistic patients, it sadly does. Don’t chalk everything up to autism. Just because something is common in Autistic individuals, that doesn’t mean it should exist or can’t be treated. Order the tests, even if they will be hard to conduct.
Ordering tests is even more necessary when your patients have trouble communicating their concerns, pain, or needs. For examples of serious acute illnesses missed by medical professionals in Autistic individuals with communication barriers, you can check out this article.
Self-Advocacy for Autistic People
What if you are a patient or your loved one is? Here are my top three tips for Autistic and Disabled people like me to remember when dealing with the medical world:
Know yourself and set into a good mindset
BELIEVE yourself and know that you deserve to be healthy. This may seem obvious but so many people receive the opposite of this message in the medical world. If you are Disabled, you’ve likely been given explicit and implicit messages about your worth for a long time.
These perceptions of Disabled bodies often come directly from health professionals themselves. For instance:
- Calling differences ‘disorders’
- Arbitrarily deciding who has a good quality of life and who doesn’t by looking at a person from the outside
- Correcting differences for cosmetic reasons without the patient’s input or consent
- Not even having basic equipment or buildings that are accessible to Disabled patients of various disabilities
- Arbitrarily deciding a person’s “mental age” based on outside perception of their ability to think and/or learn
- Not knowing very much about disabilities nor caring about Disabled lives or culture outside of office visits
Society, especially the medical field, shows us Disabled people that we are worth less than others daily and with every move we make. But what’s probably even worse than this mistreatment is the fact that these are also the very people that make up the institution of medicine worldwide.
They are responsible for disseminating the knowledge about us Disabled individuals. They set the tone and the language for the rest of society. Even when a person becomes Disabled later in life, they have already had a lifetime of messaging that Disabled bodies are less valuable. And because of that, they fall into the same or even worse feeling that they are less deserving of outstanding medical care with his standards.
Always keep in mind that you and your quality of life are worth fighting for and deserve the best that everyone else gets. It is unfair that we have to fight longer and harder and use more resources to do so, we must not give up. The truth is, our self-advocacy or advocacy for our loved ones is sometimes the only thing we have.
Don’t be afraid to educate yourself AND your medical providers
It must be noted that there is so much the people in the medical field do not know about your disability. They usually don’t get to know the day-to-day struggles and anxieties individuals and families face. They don’t understand the judgment and isolation or many other ways we live our lives. But we do need to get them to understand. Having a more holistic picture will only influence doctors to do their due diligence and test for many things instead of blaming everything on autism.
It’s sad to say, but many don’t even have much knowledge about the actual diagnoses you or your loved ones may have, nor do they have a reasonable amount of formal education on them either. Don’t be afraid to ask for more tests and share your own knowledge.
Know which conditions commonly co-occur with autism and neurodivergence
It is important for physicians and people who work with Autistic individuals to know what other conditions co-occur commonly with autism and other forms of neurodivergence. However, I find it helpful as a Disabled person myself.
It has helped me guide my physicians and allied health professionals to find the right diagnosis and, thus, treatment for me. It also means that I can better teach my under-educated therapists, doctors, and educators how to better understand and treat me and my children. It’s never just autism. Well, almost never.
Autism doesn’t inherently cause us pain or physical discomfort. Being Autistic doesn’t mean we don’t deserve to find out what is physically wrong. Just because we can’t communicate our problems the same way as allistic patients doesn’t mean doctors can rush through their appointments like our or caregivers’ concerns don’t matter.
It is CRUCIAL that doctors look for differential diagnoses, especially those that are common co-occuring conditions for Autistic people. The term due diligence comes to mind when I think of how doctors can make the most meaningful change when interacting with stakeholders in the autism community. Are doctors doing their due diligence in ensuring that all of our medical struggles aren’t just chalked up to autism?
The current status quo is Autistic people and their families suffering while going from physician to physician to get answers while eventually getting none. Our co-occurring conditions need to be treated separately from our autism, not disregarded as if autism is supposed to cause us pain. It doesn’t have to be that way. Listen to us.
About the author:
Tiffany "TJ" Joseph is an Autistic adult working in accessible education with teen and young adult Autistic non-speakers. She herself is Hard of Hearing and utilizes many ways to communicate including ASL, mouth words, and high-tech AAC (augmentative and alternative communication). Their passion in the disability space is communication and education rights for people of all disabilities. Find TJ on social media at Nigh Functioning Autism.
Recommended reading:
The Meaning & Impact of Invisible Disabilities
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