When you think about autism, you may, stereotypically, think of a boy, probably non-verbal, who may become violent at times. There is, however, also, the saying “when you’ve met 1 person with autism, you’ve met 1 person with autism”. That’s because Autism Spectrum Disorder (ASD) is so wide varying in how each individual experiences it.
The DSM V is the official American manual for assessment and diagnosis for mental disorders. ‘5’ refers to the number of iterations it has gone through to arrive at the current recommendations for the criteria needed in order to officially diagnose someone with each particular disorder.
Autism spectrum disorder (ASD) is not a mental disorder, it is a neurodevelopmental disorder, some prefer the word condition. The medical model of ASD speaks about the individual’s deficits (see each criterion below)—in future blogs I’m planning to address why this may help to diagnose someone but may be unhelpful when trying to live on the spectrum.
It is interesting to note that Asperger’s Syndrome was a separate diagnosis in the DSM IV, however inconsistencies were found between different diagnosticians—therefore, in the DSM V there’s one umbrella term. (Some people who were diagnosed with Asperger’s still use the term, they are not wrong to use it but it is not used for people diagnosed today.)
DSM V—Autism Spectrum Disorder
Criterion A—Persistent deficits in social communication and social interaction across contexts, manifest by 3 of 3 symptoms.
This means the individual will have difficulties making connections with people socially in all environments, with friends, family and strangers. All of the following 3 criteria have to be present:
A1. Social initiation and response
Deficits in social‐emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.
This covers a whole range of struggles; some people with autism do not speak while others may not understand how to start or end conversations. Other examples include: not sharing in another’s achievements, one sided conversations and difficulty sharing in social games.
A2. Non-verbal communication
Deficits in non-verbal communicative behaviors used for social interaction.
This represents the individuals difficulty with eye contact, understanding body language or gestures. Some individuals may talk with an unusual pitch, intonation, rate or volume of voice while others may not use facial expressions or struggle to coordinate verbal and non-verbal communication.
A3. Social awareness and insights + the broader concepts of social interactions
Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers).
Individuals have difficulty adjusting to different social contexts e.g. inappropriate questioning, laughing or limited understanding about other’s needs. Difficulties sharing imaginative play and making friends. Children may prefer to play with people much older or younger than themselves or to spend time on their own. Some individuals may appear to have a complete lack of interest in other people.
Criterion B—Restricted, repetitive patterns of behavior, interests, or activities, at least 2 of 4 symptoms:
B1. Atypical speech and body movements
Stereotyped or repetitive speech, motor movements, or use of objects.
Examples vary between individuals but could include: unusual speech such as pedantic, jargon, echolalia or neologisms; repetitive hand movements such as flapping or clapping, whole body movements, facial movements (grimacing) or excessive teeth grinding.
B2. Rituals and resistance to change
Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change.
While this may look like a need for control, individuals struggle with a need for routine and struggle with change. Even thinking patterns can be rigid such that there’s an inability to understand humour. Extreme distress will be observed if change is forced upon the individuals without any support.
B3. Preoccupations with objects or topics
Highly restricted, fixated interests that are abnormal in intensity or focus.
Overly perfectionist views with preoccupation in unusual inanimate objects or non-relevant, non-functioning parts of objects. Individuals may have incredibly interest in specific subjects—on face value it may not seem unusual until the depth of the interest is understood.
B4. Atypical sensory behaviours
Hyper‐or hypo‐reactivity to sensory input or unusual interest in sensory aspects of environment.
Individuals may find any kind of sensory input overwhelming or may not respond to it at all. An apparent indifference to pain/heat/cold may be observed. This may mean that they explore objects in unusual ways and seek out overt sensory input.
Criterion C—Symptoms must be present in early childhood
But may not become fully manifest until social demands exceed limited capacities.
Criterion D—Symptoms together limit and impair everyday functioning.
Although the individual may have learnt to mask from a young age, thus the impairment may appear subtle to the observer, within the individual, the impact of their symptoms will be profound.
Additional symptoms and co-morbid conditions
People diagnosed with autism may experience all sorts of other symptoms/difficulties. These many be related to their autism or may be a co-morbid condition. Symptoms that may be experienced/observed include (but certainly not limited to):
- Shutdowns – someone who can usually speak/communicate well, becomes uncommunicative/has trouble communicating due to excessive stress linked to all of traits A, B2 and B4.
- Meltdowns – each individual will experience these differently, from excessive crying to extreme outbursts of anger/aggression. In children, this may look like tantrums; adults may feel them coming on and try desperately to suppress them for as long as possible (weeks-months sometimes) but they are a sign of extreme overwhelm and are particularly linked to traits B2 and B4 above.
- High levels of anxiety – due to the world being set up for neurotypicals, it can be incredibly daunting for an autistic to attempt navigation. When communication doesn’t go to plan, sensations are overwhelming or routines are disrupted, feelings can become hard to bear.
- Taking longer to process events/trauma – a particular event may not cause any problems for a neurotypical person but an autistic individual may struggle to process what has happened. This is linked to traits B4 and the A above, no matter how well the autistic person works to overcome their difficulties, managing the sensory input and processing it will always be difficult.
- Difficulties managing physical health problems – this may be due to an inability to recognise signals from the body or having a higher or lower pain tolerance than the neurotypical population. This can lead to individuals becoming very ill before seeking help or taking longer to recover from illnesses. Some individuals with autism struggle with knowing when their body is hungry, satiated or when they need the toilet.
- Loneliness – people with autism still have the same human needs to be loved and to love but communicate in a different way. They may not know that their desires stem from standard human instincts and require support.
- Self-harm and suicidal behaviour – due to severe stress individuals with autism can be driven to extremely dangerous coping mechanisms. See previous blog in “mental health for all”.
Co-morbid conditions include:
- Learning Disability
- Eating Disorders
- Attention Deficit Hyperactive Disorder
- Conduct Disorder
- Personality Disorder
Please look out for future blogs when I’ll be explaining more about my experience, including why females are more likely to be diagnosed later than males, whether a formal diagnosis is necessary for support and why there’s such a link between eating disorders and autism.