September 17th is World Patient Safety Day. While this generally continues to be an area that is improved worldwide, the experience for many neurodivergent people is not always protected by the policies in place. Many neurodivergent people report negative experiences regarding healthcare, including being ignored or dismissed, medical gaslighting, being patronised, misdiagnosis, and not being taken seriously particularly in relation to pain levels. One aspect of patient safety is the initial step of being heard, believed, and treated. So how can you help your neurodivergvent kiddo experience greater patient safety both when in your care, and in the future?
Between 30 and 41 per cent of the autistic adults surveyed said they’d experienced their needs not being taken seriously, fear and embarrassment, and difficulty in communicating pain.
https://www.abc.net.au/news/2023-12-01/autistic-australians-struggling-barriers-healthcare/103160556#
Medical Expectations
Most medical professionals base their expectations on an average. Joints have an expected range of mobility; more than this, and you’re hypermobile. Eyes are expected to be able to see a particular range of distances in focus; outside this, and you tend to end up with glasses. A well person looks “bright and sparky”, and an unwell person presents in a way that tends to give clues as to what is wrong. A person with a sore foot limps or can’t walk, and says their foot hurts.
So when medical professionals encounter neurodivergent people – especially when they haven’t been advised that there is an expected difference – they often are still expecting these norms, and are basing their professional opinion on what they see.
This can result in people being misdiagnosed, dismissed, or even ridiculed. And because of other differences (processing speeds, communication differences, self-esteem, knowledge of social practices and rights, anxiety, and more) neurodivergent patients often don’t have the ability to speak against this for themselves in that moment.
Numerous neurodivergents report distressing experiences when navigating both medical and mental health appointments. Much of this distress stems from feeling misunderstood, unheard and unaccommodated by providers. Neurodivergents can present medical or mental health needs that may stray from the norm, however, most providers attempt to meet their needs with the cookie-cutter approach that is designed for successful treatment of the masses–rather than an individualized approach that acknowledges and accommodates neurodiversity. To be fair, most providers do not have adequate training in understanding and supporting neurodiverse patients. Some want to do well, but do not know how to provide a successful appointment process. However, according to the report of neurodivergents, other providers refuse to see and accommodate for the neurodiversity (even when it is requested). In both situations, it causes mistrust in providers and distress over appointments.
– Kelly Mahler https://www.kelly-mahler.com/resources/blog/unsafe-unheard-misunderstood-trauma-neurodiversity/
Expression of Pain
Interoception and proprioception differences, communication differences, and chronic pain associated with co-occurring conditions can make effectively communicating pain difficult for neurodivergent children.
Some children can experience broken bones without expressing pain, or reducing usage of that body part.
Others can regularly express pain but in a way that comes across as “whinging”, attention seeking, or making excuses for not meeting requests or expectations.
Neurodivergent children living with chronic conditions that result in pain, such as hypermobility or encopresis, are more likely to experience pain that their neurotypical peers, and as such may normalise this experience. This means their baseline (1) on a pain scale of 1-10 is closer to a 4 for most people. Therefore if they do report pain using a scale, the reality may be far more severe than is being expressed.
When I was in labour with my first child, I was actively reprimanded by midwives in what is considered for being one of the best maternity hospitals in London, for “wasting energy”, and “being dramatic”. I was told the pain I was experiencing was normal, and when I explained relatively calmly that I felt there was something wrong and it hurt unbelievably badly I was met with an eyeroll and a, “Yes, that’s what labour feels like. This is your first, right?” My records listed my pain as moderate (around a 6-7 out of 10). Once my awesome kiddo had been born, a note was added to my records suggesting that – based on what they’d later discovered – my pain levels had probably been around a 13 out of 10 (autistic brain does not like this scale… but I do appreciate the validation!).
When my second was born, I was told I wasn’t as close to giving birth as I was under the impression I was, based on observation of my behaviours and speech, so I could go home for at least a few hours if I wanted to. I opted to stay, and got put in a room at the end of the hallway. Something like 15 minutes later I was kneeling on a wheelchair that was being hurriedly hurtled down the hallway by a very apologetic midwife, back to the delivery suite. Awesome kiddo #2 was born 9 minutes later.
For a long time I was baffled as to why these professionals (the latter also very caring, kind, wonderful midwives!) were apparently so clueless.
It wasn’t until I understood my own neurotype that I could reflect back upon these, and other, situations involving extreme pain and realise that my experience and communication of pain is not typical. Apparently if you’re in real pain you shouldn’t be able to verbally express this, due to the severity of the pain being debilitating. And a key sign of labour really ramping up is when you can no longer speak during contractions; three (back to back! Ouch!) births later and I still haven’t experienced this.
These days I approach appointments involving pain, or potential pain, by actively expressing my neurotype, my differences in communicating pain, offer a pain scale and say that I expect it to be accepted whether or not I’m being typical criteria, and collaborate with the health provider to come up with an alternative means for communicating severe pain. My dentist, for example, knows that when I clench my fists I’m fine (she still usually stops and checks in, because she’s delightful), but that if I raise my hand she is to stop immediately. She also knows it’s a good idea to actively ask me if anything hurts, especially if there’s a situation in which nothing should hurt.
I would strongly recommend being hyperaware of your child’s illnesses and injuries. Compare what you or their doctor can observe, with how your child presents or communicates. You might have positive findings such as:
- Your child appears incredibly aware of their own body. For example, pointed to where their body hurts during a cold. A scan shows that’s precisely where they are harbouring a chest infection
- Your child is able to calmly and clearly express that they are unwell or in pain, and what they need
- Your child can tell you when they’re coming down with a bug before they’re showing any symptoms
You might list some more concerning observations:
- Your child can experience injuries without noticing
- Your child can injure themselves badly and notice but not care; they might not afford themselves the rest or healing they need without significant encouragement or support
- Your child is hypersensitive to certain types of pain (I would rank kicking my little toe significantly higher on a pain scale than cutting my hand, during the initial pain phase, for example)
- Your child might seem very calm or indifferent when communicating serious pain or illness, which might mean they don’t receive the attention required
As their parent, advocate proactively at appointments or when they need support. Don’t wait for the miscommunication to occur before you speak up. For example, if your kiddo doesn’t express pain typically and they have a suspected broken finger, when you reach Emergency Triage don’t just tell them, “I suspect my child has broken their finger.” They’ll look at your non-crying child who is throwing and catching their favourite stuffed toy, and assume you’re wrong. Tell them something like, “I suspect my child has broken their finger. They are autistic, and don’t express pain behaviourally or tend to avoid exacerbating pain. They have shared that they’re feeling a 9 out of 10 in pain. I would like them to be seen as soon as possible, or administered pain relief while we wait.”
The first step to patient safety is often being adequately listened to in the first place.
A Healthy Future
If within your child’s capacity, involve them in their own health and medical appointments as much as possible. Select neuroaffirming care providers, and support them in getting to know and understand your child. Try to help your child build a rapport with any regular providers, so that they are able to communicate confidently, openly, and honestly, to the best of their ability. Teach them about patient safety, what this means, what it looks like when it’s happening, and what it looks like when it isn’t.
Encourage them to communicate their own differences and needs around pain and health, and explain to them how this differs to what might be expected of them.
Empower your child to speak up if they don’t feel they are being heard or acknowledged, to request additional time to think and process information if needed, and to ask as many questions as they want either at the time or afterwards.
Speaking Up Formally
In Australia, many health policies are held at a state-based level, and are not consistent across the country. However, there are a number of options if you or your child feel you are not receiving adequate medical attention, particularly in a serious hospital situation.
Queensland has Ryan’s Rule, where parents can request a clinical review of their child if their condition is not improving, or they don’t appear to be receiving adequate treatment. NSW has a similar system in a number of hospitals called REACH.
While there may not be formal systems in place in all states, generally stating that you are requesting a “clinicial review” and that you would like this request to be put on file and acted upon, will trigger a response.
In Australia, whatever age your neurodivergent child is, they will always have the same healthcare rights as their peers, and this includes accommodating their differences; allowing them to use a friend or family members as an advocate; or to be provided with an advocate if they don’t have someone they can use. All people deserve patient safety.