What You Need to Know
To receive a diagnosis of autism based on the criteria in the DSM 5 you need to display characteristics which are evident from early childhood in both of the following areas:
Persistent difficulties in social communication and social interaction across contexts, not accounted for by general developmental delays.
Restrictive, repetitive patterns of behaviour, interests, or activities.
Whilst these descriptions might be useful for diagnosis they do not really tell us much about what autism looks like in the real world. In this section we will explore some of the characteristic traits of autism and what it looks like in the real world. For more detailed information please check out my blog posts.
Communication differences have long been one of the defining features of autism and describe both how an individual communicates with others and how they understand what is being communicated to them. The way in which an autistic person communicates varies from individual to individual and the skills needed are likely to develop to at least some degree during childhood. Some communication styles you are likely to see include:
Non-verbal: Children who are non-verbal will not be able to form words in a conventional way although they may be able to learn to use ‘words’ using visual supports and other communication aids. These individuals may go on to develop some verbal skills in time. Despite not being able to form words, individuals in this category will usually attempt to communicate in many ways. This might be through noises, gestures and actions to indicate what they want or communicate different emotional states.
Limited vocabulary: These children may be able to communicate verbally using simple words or sentences but will often also benefit from visual supports or other communication aids. They may present with echolalia by repeating back words or phrases they have heard before either immediately after hearing a statement or some time later. These individuals may use echolalia to communicate meaning by drawing on relevant phrases they have heard in the past. For example, Owen Suskind who starred in the book and film ‘Life Animated’ learnt to communicate by copying phrases from his favorite Disney films.
Social communication difficulties: Some autistic children will not experience much difficulty with their vocabulary and verbal abilities but may still have some differences in their social communication style. These individuals may present with unusual tones of voice, difficulties with turn taking in conversations and with a lack of understanding of the social norms of communication. They may be more likely to muddle up pronouns (such as he and she). Some autistic people may use very sophisticated language but this may mask a difficulty with comprehension, this is also apparent in some cases where a person may be able to quote great chunks of books or poems verbatum without understanding the meaning of what they are saying.
Generally, an individual with autism and severe communication difficulties can understand what is being communicated to them at the same level or slightly higher than their ability to communicate with others. If you are communicating with a child who is non-verbal you will be most successful using single words with visual supports. A child who can communicate using two words strung together is likely to be able to understand sentences containing between two and three words. It is important to remember that many autistic people will have difficulties in processing what you are communicating and may need as long as 20 seconds to process and respond to what you are saying. Having said that there may be times when an individual’s understanding is increased, particularly at times of low arousal and they may well pick up on conversations going on around them but find it difficult to respond.
To receive a diagnosis of autism an individual will need to exhibit some difficulties with their social interactions. These issues may present themselves in the following ways:
Reduced eye contact
Unresponsive to their name when called
Unaware of social conventions (including understanding public and private behaviour such as when it is appropriate to be naked or touch your genitals)
Difficulties with conflict (may act aggressively)
Inappropriate displays of emotion (for example laughing at an inappropriate time)
Difficulties sharing with others or waiting their turn
May appear controlling of others and their actions
Unaware of different social rules for different relationships for example the different way of relating to strangers compared to people they know well
Difficulties with initiating or joining in activities with others
Less impacted by peer pressure
Less impacted by the media (trends, fashion etc)
More likely to stay true to own interests and passions
Difficulties with interpreting facial expressions and non-verbal communication
Sensory sensitivities appear to be a defining trait in autism. Sensitivities can present themselves in positive ways such as having an excellent pitch and attention to detail. They can also result in too much information being absorbed however, which can make it hard to process the relevant stimuli in a given situation. Without adequate coping mechanisms or support this can lead to sensory overload. Trisha Van Berkel describes the autistic experience as ‘having a pure heart and being very sensitive. It is about finding a way to survive in an overwhelming confusing word.’
Sensory sensitivities can be experienced in eight different forms. The five commonly referred to senses are sight, hearing, taste, smell, and touch, also known as the external senses. There are also three additional senses to consider known as the internal senses which are:
Vestibular sense: provides information to support our balance and body posture and helps us to understand where our body is within a space by monitoring the position of our head. This information is provided by a system in the inner ear which affects your balance if you spin around or if you have an ear infection.
Proprioception: provides information about how our body parts are related to each other and where they are in space. This information is gathered from feedback from your muscles and joints. An example of proprioception in action can be experienced if you close your eyes and move different parts of your body. Your proprioception allows you to know where those body parts are without looking at them.
Interoception: this sense gathers information from the different organs in the body to let us know what our needs are. It lets us know if we are hungry, thirsty, too hot, too cold, , if we need the toilet and gives us information about our heart rate. Interoception also provides information on our emotional states including the sense of feeling happy, sad angry etc.
Sometimes sensory sensitivities can lead to discomfort, pain, or feeling overwhelmed. The following are some examples of behaviours that can be caused by sensory differences however these behaviours may have different causes or morph to serve a different function over time.
Striping: This could be removing one item of clothing that is uncomfortable for example shoes or an itchy shirt or the child may want to remove all their clothing.
Dietary restrictions: In some cases, the child may only eat an extremely limited variety of food and want to eat the same foods every day. In other cases, the child may eat a variety of foods but dislike it when foods are mixed together.
Seeking out or avoiding touch: Autistic people may find light touch aversive or deep pressure calming.
Covering ears: To block out sounds they find unpleasant.
Toe walking: This may support the person to regulate the information they are receiving about their body’s movement and position in space.
Aversion to bright lights: This occurs particularly with florescent lighting and can lead to to a lateral gaze (looking at objects using side (peripheral) vision rather than directly using their central vision).
Avoiding eye contact: This may be to avoid overwhelming emotional feedback.
Tapping: This may support an individual to orientate their body within the environment.
Jumping: this can aid proprioception by providing information about where the body is in space and the relationship between different body parts
Rocking and spinning: provides stimulation for the vestibular system
Seeking out sensory experiences: As well as sensory sensitivities making some experiences unpleasant, they can also lead to an increased pleasure in some instances. For example a child who seems to dislike it when music is played too loud may seek out other auditory experiences such as holding a ticking clock to their ear or making noises with their voice for pleasure. Similarly to the non-autistic population an autistic person may find some sounds aversive and others enjoyable, however their responses to sensory stimulation might be much more extreme. A person on the autistic spectrum is likely to experience more pleasure and pain through sensory experiences than a non autistic person.
Attention differences: Some autistic individuals may experience difficulties in choosing which sensory information to pay attention to at a particular time.
SELF- STIMULATORY BEHAVIORS
Self-stimulatory behaviors (also known as stereotypy or ‘stimming’) describe how we use pressure or body movements, particularly repetitive movement to change the way we feel. We all use self-stimulatory behaviors of some sort to help us to regulate and stay calm, for example when we are feeling excited, angry or scared. One common example of self-stimulatory behavior is clapping. Whilst clapping also now has a social purpose to show approval at a basic level it allows us to release pent up energy when we are happy or excited. Other examples of self-stimulatory behaviors include:
Spinning (self or objects)
Hitting or applying pressure to a part of the body
Repeating a noise or word
Tapping with the hand or foot
Everybody has their own repetitive routines that they will undertake throughout the day. Activities such as driving can become automatic as the brain goes on ‘autopilot’ freeing up thinking space and energy for other things. There are many other routines that we put in place throughout our day that follow a set pattern, for example when getting ready in the morning. My morning routine comprises making a cup of tea, followed by a shower, getting dressed and then getting the things I need ready for the day. Your morning routine may be different, but it is likely you will complete the same actions in the same order every day. If we started off each day fresh with no idea of what we need to do it would likely be chaotic, take much more time and cause a great deal of anxiety. Routines allow the body and mind to stay regulated and avoid constant decision making in known situations. For many people with autism their daily routines may not look that different to a non-autistic person’s. The main differences appear when something causes a change to the routine. If I was getting ready in the morning and I had run out of teabags I might skip that step in my routine. If the bathroom was busy, I would rearrange my routine and do something else first. Both these situations would cause me frustration and anxiety and throw me off my rhythm for some time, but I could adjust and move on without too much difficulty. Many autistic people would find it much harder to cope with these seemingly minor changes to their routines. Their bodies may respond with overwhelming levels of anxiety which could lead the individual to ‘meltdown’ and show extreme resistance to moving on.
For some people with autism their adherence to more and more complex routines can seriously inhibit their daily lives. These routines are often apparent during transitions when a person may need to wait for a particular cue, touch certain objects or step in a particular way, which in extreme cases can lead to these routines taking an increasingly long time to complete and severely limiting the person’s ability to take part in everyday events.
MOUTHING AND PICA
I have grouped these two behaviors together because even though the functions are different, they present in a similar fashion. Mouthing is a natural developmental stage where children will use their mouths to explore objects. Many children with autism will continue to explore objects around them by putting them in their mouths and it is important to ensure that toys and other objects presented to these children do not present a choking hazard.
Pica is a term that describes the ingestion of inedible objects. Some common examples of things that children with autism might ingest include:
Many children with autism have what are referred to as special interests. These are the activities they will choose to engage in above all others during their free time. Just like the non-autistic population their interests can be diverse but are likely to be linked to their special abilities and/or sensory sensitivities. Some examples of special interests include:
TV show theme tunes
Circles and balls
Transport and travel
Autistic people can sometimes become overly focused on these special interests at the expense of everything else including basic personal care. However they can also often represent great areas of strength. Special interests can become vehicles for learning new information and if nurtured may offer career opportunities in the future. Hans Asperger was quoted as saying, ‘it seems that for success in art or science a dash of autism is essential’. Special interests can be a route to achieving and experiencing personal satisfaction.
All children are prone to the occasional tantrum and some children may experience acute stress responses or meltdowns. Typical behaviors seen during an acute stress response or tantrum include:
Throwing or destroying property
Aggression directed towards the self or others
The difference between these extreme reactions in the autistic and non-autistic populations is that within the autistic population these reactions may be more frequent, longer in duration and are more common in older children and adults. One reason autistic people are more prone to meltdowns is due to sensory sensitivities causing sensory overload which can be overwhelming and unpleasant causing the body responding with a fight, flight or freeze response.
Extreme reactions are often divided into acute stress responses or tantrums based on their causes, but their presentations can appear very similar.
Some differences are listed below:
Tantrum: A tantrum is a learned behavior that has a purpose. The purpose might be to get something they want or to avoid something that they do not want. Typically a child does not learn how to tantrum until they are around three years old. When a child is in a tantrum, they are likely to be aware of their surroundings and be able to communicate as normal. A tantrum will end very abruptly if it achieves its aims, but it can also develop into an acute stress response if it is not resolved.
Acute stress response: An acute stress response is a physiological reaction to an overwhelming experience. Its purpose is to prepare the body to fight, freeze or run away in response to danger. When experiencing an acute stress response, the person may show less awareness of their environment and physical sensations such as pain. They may struggle to communicate or hear what is being said to them. It is unlikely to end abruptly but will likely reduce in intensity as the person manages to slowly regain control.
SELF INJURIOUS BEHAVIOR
As many as 42% of autistic people will engage in self-harming behaviors at some point in their life time, this is significantly greater than the prevalence of self-harm in the general population which is approximately 17%. The type of self-harm that is used also differs between the autistic and non-autistic populations with hand hitting being the most common type of self-injurious behavior seen in the autistic community and cutting being the most common in the non-autistic community. There are probably several reasons why self-injurious behavior is more common in the autistic population. Autistic people may be less influenced by social norms and therefore more likely to engage in non-normative behaviors. We also know that autistic people are at a greater risk of suffering from anxiety and depression which may lead to self-injurious behaviors. Self-injurious behaviors can also be a method of communication for people with limited language and can be used for example to attempt to communicate a need or a frustration. In some other cases self injurious behavior may be a maladaptive method of reestablishing a boundary between the self and the outside world.
CO-OCCURRING MEDICAL CONDITIONS
As a population, people with autism are more likely to experience the following co-occurring conditions:
Gastrointestinal issues (it has been suggested that these issues could be caused by the limited diet of some autistic individuals or the ingestion of inedible substances)
Psychological difficulties such as anxiety and depression
Attention deficit hyperactivity disorder or ADHD (although as there is much cross over between ADHD and autism it is not clear whether ADHD is a separate condition when co-occurring with autism)
Some studies have suggested links between multiple co-occurring conditions and autism. For example people with autism and gastrointestinal issues are more likely to also have sleep disorders and those with epilepsy are more likely to have learning difficulties. The most prevalent co-occurring condition appears to be epilepsy with some studies suggesting that epilepsy affects a third of the autistic population. The onset of epilepsy in the autistic population ranges from early childhood into adulthood.