Visiting the doctor can come with a number of challenges for autistic people. Autistics commonly experience miscommunications or misunderstandings, which are frustrating at the best of times. These are particularly difficult when the person you’re interacting with is also the person you need help from when you’re vulnerable, unwell or in pain. This resource aims to look at some of the challenges and how they might be minimised.
The below topics are not going to be relevant to every age group but may provide an understanding of why visiting the doctor can be difficult.
Feeling heard, understood, and validated:
For many autistic people visiting the doctor can be a very invalidating and upsetting experience and they can leave feeling unheard and misunderstood. Having a good understanding of autism and the autistic experience can help to minimise this. But here are a few reasons why this can be a common experience:
Expression and experience of emotion, pain, and discomfort:
The way autistic people express and experience emotion and pain can differ from that of non-autistic individuals. Autistic people may not express emotion or pain in the way you expect them to. They could look completely fine, be laughing and having a conversation, and be distressed or in severe pain at the same time. If an autistic person is telling you they are not okay or that they are in pain, listen to them – don’t judge the accuracy of their statements on how composed they look.
Similarly, they might experience pain more intensely than others as a result of sensory differences. But that doesn’t make the pain any less real and it should not be brushed off or ignored. Especially considering that being too quick to put it down to sensory issues could just make the individual feel as though they are not being taken seriously.
Terminology:
Language and the way you speak about autism is very important. Staying up-to-date with current language preferences will help you to avoid saying something that could cause the individual to feel unsafe being open about their autism. It’s important to respect individual preferences but as a general rule, and as a starting point, avoid the following phrases and words:
‘Person with autism’ or ‘suffers from autism’ – Most autistic individuals prefer ‘autistic’ over ‘person with autism’. ‘Person with autism’ implies that being autistic is negative or that it is something separate from the individual, which is contradictory to the way many autistic people feel.
‘Everyone is a little autistic’ or ‘Everyone is on the spectrum’ – These phrases are often very invalidating and are frequently used in a way that comes across as an attempt to minimise the autistic person’s struggles or make it seem like they are overreacting. These phrases are also not correct and saying them will likely let the person know that you do not have a good understanding of autism and that they need to proceed with caution. The autism spectrum is not linear, this means that it isn’t a matter of being ‘more’ or ‘less’ autistic. But autistic traits are human traits, so just because an autistic person experiences it does not mean that no one else can experience it.
‘High-functioning’ or ‘low-functioning’ – Functioning labels are not an accurate reflection of individual support needs and are only reflective of the comfort levels of, and convenience for, those who interact with the autistic person. They are often brought up in a way that minimises or invalidates struggles that the autistic person is facing.
Communication differences:
Autistic individuals may communicate quite literally, may struggle with broad questions, may need to communicate via different means (e.g. AAC or writing) or may have a hard time communicating at all.
Below is an example of how a conversation might go:
“What brings you in today?”
“My mum said I needed to see a doctor, so she brought me here.” “Okay, how can I help you?”
“I don’t know.”
“Do you have an illness or injury?”
“I guess so.”
At this point it’s easy for the health professional to start getting frustrated, which can end up feeling invalidating. In the doctor’s mind they’ve just asked the same question three times. They’re asking what’s going on or what symptoms the person is experiencing. But sometimes, especially when unwell or hurt, the autistic person is hearing three different questions.
They’ve been asked how they arrived at the doctor, and they’ve answered that. They’ve been asked how they can be helped, which they may not have an answer to, and is the reason they’re seeing a doctor. If they knew what would help, they might not need the appointment. And they’ve been asked if they have an illness or injury. Again, they might not know if what they’re experiencing qualifies as one of those issues. Some pain or distress isn’t necessarily an illness or injury.
If an autistic person answers questions like this, in a direct and literal manner, they probably aren’t being deliberately difficult. They may be answering the question that they feel has been asked or they may just be having a hard time processing the question and communicating the information that is being sought.
Questions like these also become more complicated when the reason for their visit is mental health-related, and they don’t necessarily want to be there. For example, if you say, “Are you worried you might do something to harm yourself?”, and the person does want to harm themselves, they might not be ‘worried’ about that happening. Why would you be worried about something happening when you want it to happen?
Literal and direct communication, void of implications, is commonly misunderstood by non-autistic individuals and can result in the autistic person feeling misunderstood.
It’s also not particularly uncommon for issues to arise when the autistic person attempts to communicate via any means other than speaking. They might write things down, type, or use a digital device but people often do not understand why the person cannot just have a ‘normal’ conversation since they are there in person. This is particularly the case when they know that the person can usually or sometimes communicate via spoken conversation.
It’s not uncommon to hear “Why don’t you come back when you’re ready to talk”, “Why are you here if you’re not going to talk to me?”, or “I can’t help you if you don’t tell me what’s going on.” This can leave the autistic person feeling misunderstood, frustrated, and like there’s just no way for them to access the help that they need.
It can help to be more direct and specific. For example:
What symptoms are you experiencing?
What would you like me to help you with?
Are you feeling unwell, are you in pain, or is this mental health- related?
Do you intend to harm yourself?
You could also look at creating a tickbox sheet that would allow the person to mark which symptoms they’ve been experiencing. Or give them an outline of a person and ask them to draw where things hurt or feel bad.
Sensory differences:
Sensory differences or sensitivities are often not well understood, and this means that people often think they’re overreacting or being dramatic, which, in turn, results in invalidation.
The sound of electricity can be painful. Brushing your teeth can be painful. Minor injuries or illnesses can feel intolerable and distressing. Even if one person’s experience does not line up with the majority, that does not mean it’s not possible or that the person is lying.
Alexithymia and interoception:
Some autistic people have a hard time identifying and describing how they’re feeling emotionally as well as how they’re feeling physically. This can sometimes be misinterpreted by others to mean that there’s nothing going on or that the person is okay.
Self-diagnosis:
If an autistic person regularly comes to the doctor with a diagnosis that they think they have, it does not necessarily mean that they are trying to find something wrong with themselves or that they are overreacting to things that they are experiencing.
In some cases, autistic people have come to the conclusion that they aren’t going to be heard or understood or that doctors’ appointments are just too much to handle and the only way to get answers is to find it themselves. In some cases, it’s going to be that they’ve spent a decent amount of time looking into different conditions or potential explanations for things, and they are coming with the answer that makes the most logical sense to them. And, in some cases, it can also be that they struggle with uncertainty or unanswered questions and not having a diagnosis to explain their experiences, is uncomfortable or stressful.
If they do ask about a particular condition, it will likely not be enough to just tell them that they don’t have it. They might need a logical and evidence-based explanation as to why it’s been ruled out and the doctor to try to investigate, or offer, an alternative explanation. If the reasoning given, does not outweigh the level of logic and reasoning they’ve come in with, there’s a good chance that it will not ease any concerns or change beliefs. Sometimes they are not worried at all, they are just genuinely looking for an explanation and someone who might be able to give them some answers.
Making an appointment:
The task of making an appointment is something that can cause a lot of anxiety for many people, not just autistics. For autistic people, it may be that they struggle with phone calls, they don’t know what to say to ask for an appointment or what information they need to provide or they may be afraid to be told their reason for wanting an appointment is not good enough, which is also something that can happen when the autistic person struggles to communicate what’s actually going on for them or how they are feeling.
Additional stressors:
Below are some of the added stressors that can pile up before the autistic person even gets to speak with a doctor. These can further contribute to miscommunications and can reduce capacity to cope with frustrations.
Sensory differences:
Visiting the doctor can be an incredibly overwhelming experience. Waiting rooms and doctor’s offices are often very stimulating environments; bright lights, people talking and moving around, lots going on and lots to look at. Where possible, having alternative places to wait can be helpful, for example, in a separate room, in the car or outside.
Uncertainty, changes, and unmet expectations:
The fact of the matter is that doctors often run late or don’t know how long it will take before they are able to see you. That’s the way it is, there’s not a lot that can be done about that. However, it’s important to understand and acknowledge that this can be particularly stressful for autistic people and can result in meltdowns or shutdowns. Uncertainty, changes, and unmet expectations can make it harder for autistics to communicate, process questions or manage stimulation.
It can be helpful to reduce or avoid this where possible. If an earlier appointment is less likely to run late, book an earlier appointment. Be careful about telling an autistic person that you’re going to do something, don’t offer something that you can’t or might not follow through on.
Validation and understanding around autism:
Autism is a complex condition, and autistic people’s experiences of autism and feelings about their autism can vary widely. Many autistic people consider autism to be a part of their identity, it’s something they are proud of. But it is also a disability. It is not always easy being autistic in a world that functions around neurotypicals. Viewing it as a disability doesn’t mean viewing it negatively, it means acknowledging that the person is disabled or disadvantaged by the structure of society.
GPs need a broad understanding of a huge range of conditions, so finding a doctor with in-depth knowledge and understanding of something as complex as autism can be challenging.
Being open- minded and willing to listen to the patient and take their deeper understanding of autism on board is essential in ensuring that the approach to treatment, communication and understanding of shared information, is going to go smoothly and make the autistic person feel heard and supported.
It is essential in ensuring that the autistic person feels safe to express what’s going on, in whatever way works for them. And it is essential in ensuring that the autistic person isn’t going to regularly feel invalidated by the professionals that they need to trust.
This resource was written by an autistic author (2022).
