Autism is a neurodevelopmental condition that is largely characterised by (but not limited to) impairment or difficulties in social communication, social interaction, restricted or repetitive behaviour patterns, and impairments in general occupational or day-to-day functionality.
What this essentially means is that individuals with an autism spectrum disorder may find it difficult to express themselves in the typical manner that most other (non-autistic) people are used to. Some high-functioning autistic people might be quite verbal and able to interact and communicate well, but may still find it difficult to understand certain social contexts, such as figurative language. An autistic individual might not understand the humour or purpose or context of metaphors, jokes and wordplay. They might take an expression very literally. An example of this is when a lady was telling me about her own struggle with depression; she said, "I was feeling blue all the time-" upon which her 11-year-old autistic son promptly reminded her, "But you can't feel like a colour. And I have never seen you turn blue." (We explained the concept of such figurative language to him, but also had to agree with him that one does not generally acquire a blue Avatar-like appearance when one is depressed).
This is still an example of high verbal and communicative functionality in autism. Individuals on the more severe end of the spectrum generally experience difficulties with both, word comprehension and word production. That is, not only do they face difficulty forming sentences and social language, they encounter the first level of trouble in the very understanding and social context of words. Therefore, autistic children and adults often have a hard time navigating through social situations that require a lot of interaction and back-and-forth communication. One of the main aspects of daily living that this impairment can affect is physical health and expression of pain.
An individual with autism might not feel pain in the same way a non-autistic person would. An individual with autism might not express their pain in the same way a non-autistic person might. Our behaviours and expressions and language are the direct result of how we understand and adapt to our environment. As a child, one tends to learn that crying when hurt or in pain will result in a responsible adult giving us attention, care, band-aids and kisses. Through social reinforcement, children learn to wait for pauses in conversations or learn to say "excuse me" or raise their hands before they speak, in order to avoid interrupting others. Even one-week-old infants learn to smile as a means of communicating with their caregivers. This is all part of social learning. Some behaviours are innate and not learned (but that is a topic for another post). An autistic individual struggles to acquire and learn these social tactics that might seem to come naturally and so easily to non-autistics. Therefore, where a non-autistic child learns to cry or speak up when something is bothering them, an autistic child will tend to struggle to express themselves, or they may express themselves in ways that non-autistic people do not understand.
“Oh, he’s been so brave and good. He’s not made a fuss at all.” That’s what the well-meaning care worker said about my autistic older brother after he broke his nose in an epileptic seizure some years ago. Except that Timothy wasn’t being brave or good – he’s just not able to tell us when something is wrong; he doesn’t have the words for it. Like a third of people on the autistic spectrum, my 58-year-old brother has very limited verbal communication. He can speak, but usually only when prompted, and in learned, short phrases or single words. And like the majority of people with autism, he has unusual sensory responses. We suspect that he doesn’t feel pain in quite the same way we do.
This does not mean that autistic individuals do not feel pain. They might even feel pain in the way most other people do. They might feel more pain (hyper-sensitivity) or less pain (hypo-sensitivity) than what would generally be expected on a pain rating scale, given a certain medical condition. The difficulty in healthcare arises when an autistic individual cannot explain or describe the nature, location or intensity of their discomfort. Baron's brother, Timothy, for example, had been slapping his face because he was in pain. When taken to a dentist, he was given antibiotics for an infected root canal. He had been unable to convey to his family or the nurses what was physically ailing him.
Another instance of miscommunication in such cases is that of a 6-year-old severely autistic participant in a study I was conducting. The participant's mother reported that one month prior to our meeting, the girl had been crying incessantly for two days, slamming only the right side of her head against walls and furniture, screaming when put to bed, and had even tried to insert a pencil into her right ear. Her vocabulary and communication skills were very limited. The child was first taken to a therapist, who could not pinpoint the cause of the problem, but referred the girl to a specialist. When she was finally taken to her paediatrician, they immediately found that she had had an ear infection for at least three days, but her parents had been unable to understand what the girl had been trying to tell them all along, in her own way. Since then, her occupational therapist and speech and language pathologist had been working on creating a system of flashcards with different colours and simple expressions for her to use (red for anger, orange for pain, sad faces, happy faces, angry faces, etc) to facilitate communication and prevent such incidents from occurring in the future.
DeWeerdt's "Dismantling autism's house of pain" also provides scientific and medical insight into autistic presentation of pain:
A closer look at the literature confirms that although some people with autism are insensitive to pain, others are unusually vulnerable to it. Sensory sensitivities — exaggerated reactions to certain sounds, lights or other stimuli — affect up to 70 percent of people with autism. Pain may emanate from autism-related health issues such as gastrointestinal problems. And difficulties with sleep, anxiety and perseveration, or the tendency to fixate on a particular thought — all common features in people with autism — may intensify pain.
Autism.org has an extensive list of resources for medical practitioners on the basics of autism, how to approach and work with autistic patients, which factors to keep under consideration, how to gain and how to convey information to autistic patients. During my own appointment with a GP, we started talking about my experience working with autistic individuals. My doctor asked me, "So by what age should we be looking out for autistic symptoms? Do these symptoms become observable around the age of 7, 8 years?" Autism is sometimes recognisable in toddlers, sometimes even in infants around the age of 11 to 14 months. Waiting until the age of 7 years, (or even 13, 14, or even 20 years in some cases) for a diagnosis of autism can be counter-productive for the autistic individual. The critical window of opportunity for early intervention and timely therapy is often missed, because parents, caregivers, and even doctors often do not know what kind of signs and symptoms to look out for. I directed my GP towards these autism.org.uk resources, and others:
- Survey of General Practitioners in England on the subject of autism
- Autistic Spectrum Disorder, Royal College of General Practitioners
- Autism Spectrum Disorder: A Clinical Guide for General Practitioners By V. Mark Durand
- Autistic disorders: What can a physician do?
- Saskia Baron's "My Brother Timothy"
- 350,000 children suffer from autism in Pakistan
- Knowledge and Attitude of General Practitioners Regarding Autism in Karachi, Pakistan
I hope he read at least one of these, and that by expanding his knowledge, the doctor was able to help at least one autistic individual or the family of an autistic individual in clinical consultations since then. It can be overwhelming and demanding for a non-specialist to watch out for and accurately identify autism spectrum disorders, and then appropriately refer a patient to the right psychiatric/psychological/therapeutic services. But if a medical practitioner is to do justice to each patient, regardless of the patient's ability to express or explain discomfort, then this medical awareness and knowledge is imperative. Perhaps this is a far-reaching statement, but a good doctor is one who can pick up on the patient's unease and symptoms even when the patient himself is not fully aware or cognizant of their own discomfort. Each patient, regardless of whether they are autistic or not, has their own needs, and each patient presents medical and personal challenges in different ways. When paediatricians, family practitioners and nurses are usually the first medical staff that interact with autistic individuals, there is a lot of responsibility that goes into catering to the patient's requirements, treating them appropriately for their physiological symptoms and then referring them to therapeutic or psychiatric/psychological services for their mental health needs.
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