Everyone seems to know that autistic people don’t like to make eye contact and somehow don’t socialise much. Some people, moreover, know the “official” symptoms of autism – the ones that determine the diagnosis. And only the most meticulous and curious (and also autistic people themselves) know what else there is:
- Non-obvious implications of the “official” symptoms, sometimes very unexpected ones
- Symptoms, traits and syndromes that are not part of the main symptoms, but are still directly related to ASD.
- Personal observations by autistic people themselves – those likely manifestations of ASD that scientists have not yet reached, but which are talked about at the level of personal stories and generalised experience.
I try to balance my texts between research and people’s personal experiences, so I’ll tell you about them all in turn!
The “official” definition of autism (I refer to ICD-11) consists of just two symptoms – broad, rather vague and with a lot of implications:
- Problems with social interaction (difficulty reading and responding to non-verbal cues, problems understanding and responding to social context, etc.)
- Repetitive, rigid patterns of behaviour, interests and activities (repetitive movements, rigid thinking, difficulty adapting to new things, rigid routines, preoccupation with rules and rituals, and sensory sensitivities are all included).
These two criteria determine the diagnosis. The ICD also lists some symptoms and other disorders that are common in autistic people but are not necessary for a diagnosis. These include
- Intellectual disability
- Disorders of speech and language development
- Developmental delays
- The presence of anxiety and depressive disorders (and generally a high number of co-occurring mental disorders)
- Self-injurious behaviour (such as banging one’s head on something)
- Epilepsy and non-epileptic seizures
- Catatonia (a condition in which a person has little or no response to the outside world)
- Tuberous sclerosis (a rare genetic disorder that causes benign tumours)
- Chromosomal and genetic abnormalities
- Cerebral palsy (a group of disorders that affect movement and balance)
- Neurofibromatosis (another genetic disorder that leads to the development of tumours).
The two main ‘symptoms’ of ASD are actually so overarching that they can have a myriad of manifestations. Some are better known than others. Here are the ones that may not be obvious:
- Sensory sensitivity is not necessarily oversensitivity. A person may just as well have low sensitivity to some sensory stimuli and be in search of additional sensory stimulation. There are autistic people who like spicy food, heavy music concerts and raves with flashbulbs. There are also those who can’t tolerate any of this.
- Humans have not 5 but 8 senses: hearing, sight, smell, touch and taste, plus vestibular (sense of movement in space), proprioception (sense of the body in space) and interoception (sensations inside the body). The last three can also be hyper- or hyposensitive and can manifest unexpectedly. For example, dehydration can often occur in autistic people simply because thirst is something that should still be felt. Nausea from transport can last a lifetime because the vestibular system is too sensitive. Constant collisions with objects, furniture and doors are due to proprioception not working as it does in neurotypicals.
- Difficulties in reading facial expressions and voice intonation can lead to two opposite manifestations: either a lack of facial expressions and weak intonation of speech in autistic individuals, or conversely, exaggerated facial expressions and vivid (but possibly inappropriate for listeners) intonation. This may be the same reason why people with hearing loss speak loudly: if you can’t hear yourself, you feel you have to work harder to make others hear you. If you feel that facial expressions are difficult to read, you may want to make it easier for others and convey the expression accurately.
- Repetitive behaviours include echolalia and echopraxia. The former is the repetition of sounds and words after other people, film characters and singers, and the latter is the mirroring of body positions, which can also feel almost involuntary.
- Among anxiety disorders, autistic people are more likely than neurotypicals to have selective mutism, a condition in which a person is unable to speak at certain times.
One big problem with autism is that descriptions of symptoms, traits, states, and specifics are generally handled by people without autism.
You can’t just go to people and say: “I find it very disgusting to wear socks for some reason”. Those kinds of observations don’t generalise well and are rarely taken seriously by anyone. That’s why we have what we have:
- Ideas about symptoms and related disorders that have made their way from clinical observations by psychologists and psychiatrists into studies, and scientists have concluded for sure that yes, these conditions are indeed related to autism (but it’s not for sure because almost everywhere there is minimal sampling and so-so study design).
- Lots of everyday observations by autistic people themselves (yes, including the one about socks!) that no one has really studied in any special way.
Let’s talk about both in turn. Let’s start with the symptoms, disorders and characteristics that are most likely to be associated with autism – and which have been studied.
- Gastrointestinal disorders. People with ASD often have GI disorders, including pain, diarrhoea and constipation, and heartburn.
- As adults, there are higher risks of obesity, hypertension (i.e., high blood pressure), and diabetes.
- Sleep problems. Many people with autism suffer from sleep disturbances. These can include difficulty laying down and falling asleep; repeated awakenings throughout the night; and difficulty returning to sleep after waking up.
- One in five autistic people suffer from alexithymia. People with alexithymia have difficulty recognising, understanding and describing emotions.
- Difficulty regulating emotions. Strong emotions that are hard to regulate are more common in autistic people than in neurotypicals.
- Where there are strong emotions, there is often impulsive behaviour. This is also common in autistic people – it is also associated with sensory sensitivities and impaired executive functions.
- Although synesthesia (the perception of signals from one sensory organ as signals from another) is not specific to autism, it is quite common in autistic people. Especially the form in which tactile sensations occur without physically touching the person. For example, looking at something can cause tactile sensations.
- Problems with posture, different types of unusual gait (e.g. bouncy gait), coordination difficulties are also associated with ASD, and the neuroprocesses behind it are only just being studied.
- Hyperlexia – unexpectedly advanced reading skills in children, far beyond what was expected at their age – is also common in autism.
- A propensity for food allergies. About 11% of children with autism in one study were diagnosed with food allergies, compared to 4% of neurotypical children with food allergies.
- A predisposition to joint hypermobility (this is a connective tissue disorder in which the ligaments are weaker and therefore the joints bend more than normal)
- Menstrual cycle problems. Recent studies have shown that women with autism spectrum disorders are more likely to have problems such as irregular periods, unusually painful periods, and heavy menstrual bleeding.
- Postural orthostatic tachycardia (this is when your heart rate increases abnormally after lying down and sitting or standing up, and there is evidence that it is also more common in autistic people).
And finally, the last part is about personal observations of people with autism that they have shared (publicly, on Reddit). These are not research findings or even symptoms, but private stories from autistic people about what of their behaviours they think might also be related to autism. Perhaps some of this will be studied and described in articles in the future (and then it will go on one of the lists above). So!
- A strange, atypical or fluctuating accent
- Walking on your toes (not because it doesn’t work otherwise, but because it’s so much more comfortable-pleasant-better).
- Belonging to fandoms
- Hating drinking water.
- Breathing through an open mouth.
- Sitting in weird twisted poses
- Looking down when walking
- Uncomfortable walking ahead of other people, leading them
- Voice is either too loud or too quiet
- Unwillingness to wear socks (or unwillingness to live without them even a little bit)
- Fear of losing balance
- Hands against the chest all the time, aka raptor hands.
Autism has existed in nature throughout human history. By the measure of that history, even humanity as a whole has only recently begun to pay attention to how people are mentally organised. Figuring out how people who are different from the majority are organised is a huge task for the future. And it seems that in the case of autism, we are only at the very beginning of this journey. And if so, I would like to believe that at some point, individual observations made by specific people about their experiences will be taken seriously, studied, and will make more sense. And will help different people to better understand and respect each other’s needs (you have to believe in something, right?).