This Autism Acceptance Month, I am using my voice as an Autistic self-advocate and clinician to bring attention to a topic important to so many in our community: pain. Autistic people are more likely than allistics (non-Autistics) to experience one or more health conditions, many of which are characterized by intermittent or chronic pain (Ward et al, 2023). Even otherwise non-chronically-ill Autistics may need pain care after acute injury or illness. Unfortunately, Autistic people often face barriers in communicating about and receiving care for their pain.
Often medical providers ask on a questionnaire or in an exam if you can bend like this, stand this long, walk this far, lift this much, etc. Paperwork may include a diagram to show where pain is or ask you to rate your pain on a scale. For Autistic clients, as for probably many others, these questions do not adequately capture their lived experience, may cause confusion and distress, and make getting care for their pain harder. The way pain is assessed often makes certain assumptions about the patient that do not reflect Autistic ways of communicating.
A personal example:
I am Autistic. I also have degenerative disc disease in my cervical and thoracic spine. In my appointment I may be asked, “Can you physically look down chin-to-chest?” Personally, at this time, I am capable of such. So I answer yes. I can do that. I may even demonstrate.
For a long time, that would have been the end of my answer. My doctor may be satisfied with this answer and move on. But it leaves a lot of important information unsaid.
What they didn’t hear is the radiating pain and numbness in my neck, shoulder, and arm that happens when I look down. They didn’t hear how I have had to adjust how I write, read, embroider, look at my phone, and lay in bed. Questions about function that do not ask directly about the consequences of doing those actions are inadequate to provide the full picture. As a result I may receive insufficient pain care. I have had to learn to say these things without prompting. Providers expect you to volunteer this information, to follow up on their questions with exposition, to assume the next question. Often these expectations conflict with Autistic communication styles.
We don’t know that we should say something. If it were important, they’d ask, right? Would saying something be complaining, whining, oversharing? If I should say something, when? We think maybe they will ask later, then the moment passes, then it’s not addressed at all.
We don’t know how to say what we need to. What words do I use, when I have poor interoception or alexithymia (knowing how my body and mind feel) and have trouble describing my experience even to myself? How do I give you a pain-scale ranking when I have different pain in different places? What is a 4, what is a 10? Now or when pain is at its worst? What about when my provider doesn’t see my pain because of my masking? What if I’m overwhelmed by the medical setting and become unable to communicate in my usual way?
If we don’t say anything and nobody asks, when does our pain get addressed? How would our doctor even know? You can walk a mile? Great! And they’ll never know that afterward you’re bedridden by fatigue.
Important symptoms get missed when questions aren’t asked directly and fully and when options for communication are not broad and accessible. The current system relies on disabled self-advocates and family members to know what is important to share and to do so proactively despite sometimes less-than-covert pressure to move an appointment along. These communication barriers have real, painful, life-impacting consequences for disabled people and it’s not solely our responsibility to overcome them.
Here are some ways providers and Autistic self-advocates can help bridge the gap in communication and give/get better pain care:
Providers:
Provide a variety of ways to communicate pain. Provide options that allow for different forms of communication including speaking, writing, drawing, typing/ texting/ text-to-speech, gesture, sign, long-form or short-form answers, and the ability to move between these throughout the session. Ask open-ended questions to elicit extrapolation and specific targeted questions when following up on important details. Patients may benefit from being provided a list of words associated with pain to use during the session.
Provide processing time. Allowing for complex communication needs requires patience and collaboration on the part of the patient and provider. When patients feel rushed they may shut down and not share critical information. Providers who feel rushed may fail to ask critical questions that would change treatment plans and outcomes. Take your time to allow for clear, comprehensive communication about pain and functioning.
Look at the whole picture. It’s not just about what you can do physically but also what comes next. Ensure you’re asking specifically about how painful conditions impact quality of life. It’s important to know that even if the patient can walk a mile they may be avoiding doing so due to pain and fatigue consequences. Just because a patient looks fine and calm to you does not mean they are not in pain. Autistic pain patients may be used to masking pain and discomfort and may not show the same signals as an allistic person.
Self-Advocates:
Be honest about your pain. It’s an important symptom and talking about pain does not constitute whining or complaining. Your doctor needs to know how your painful conditions affect how you live your life. Minimizing pain ensures it will not be looked at closely by your provider because they don’t know how bad it is. Remember that you are the one who lives in your body and you are an expert on your own pain.
Track your pain to demonstrate your experience over time and find possible patterns in your symptoms. There are apps, spreadsheet templates, paper journals, and other methods available for tracking pain. Tracking pain can validate our experiences by allowing us to look back and see yes, it really is that bad, that often; or that it has improved and how.
Come with questions and statements. Write down or have a phone note or google doc of all the questions you have for your doctor and the important information you want to share with them about your condition. Have an agenda and let the provider know at the beginning of the appointment that you have an agenda and that you want to make sure everything gets covered. Ask how you can get in contact with your provider if you have questions or need to share additional information after the appointment ends.
When providers take responsibility for their part in overcoming communication challenges and patients are encouraged to self-advocate for their experience, we can improve understanding and outcomes for Autistics with painful medical conditions.
Reference: Ward JH, Weir E, Allison C, Baron-Cohen S. Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults. Mol Autism. 2023 Sep 20;14(1):35. doi: 10.1186/s13229-023-00565-2. PMID: 37730651; PMCID: PMC10510241.
Photo by Disabled And Here
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