Layers of “Autism” - from inside to outside

Those of us who frequently discuss autism with people we meet, quickly find that most people’s picture of what it is to be autistic is seriously inadequate and out-of-date.

There are many ways of understanding why this might be so - the oppressive power of the medical model, the largely inaccurate depiction of autistic people in the media, the general human tendency to stigmatise difference/otherness…

What I want to focus on here is the idea that most people’s idea of autism is overly focused on observable behaviour rather than on what it is like to be autistic “on the inside”. Not only that, but the behaviours that most people associate with autism are likely to be the ones that are selectively noticed on the basis of neurotypical priorities and concerns, rather than through genuinely curious & open observation. Worst of all, perhaps, many of the behaviours commonly associated with autism are not features of autism at all, but are a mixture of masking processes, compensatory/ survival strategies, mental illness symptoms, etc…

 

So it’s useful to distinguish at least the following four layers when describing the reality of being autistic:

 

1.       The internal experience of being autistic, how autistic people process the world. For instance:

• Intense perception, attention, intense interest, meaning, pattern-seeking
• Heightened awareness of, and interest in, details, patterns, systems
• Detailed memory for areas of interest, along with strong systemising & pattern-seeking tendencies & abilities
• See things from multiple perspectives
• Possible extremes of sensory sensitivity (in either direction)
• More motivated by truth, consistency, fairness, rules that make sense, etc, than by social conformity
• Different perception of cultural discourse (symbols, traditions, etc) so that much of it appears transparent, optional 
• Learn social rules explicitly  
• Plan topics in advance
• Difficulty with following and responding to the details of real-time social interaction
• Outsider perspective
• Feel like an anthropologist in a foreign culture

 

2.       The external (behavioural) reality of being autistic, the outputs of the inner processing. For instance:

• Systemising, organising, tidying
• Liking for structure and routine.
• Love of learning, problem-solving
• Enthusiasm, visible intense interest
• Logical, rule-based, approach to situations, including social ones
• Focus on communication as accurate transfer of practical, relevant, usable information (no interest in small talk, gossip, flattery, etc)
• Less use of body language in communication
• Stimming
• Small group of friends, based on functional connections such as common interests/goals
• Can relate to people from other cultures and in a variety of age groups
• Emotions follow different patterns to the "normal" (neurotypical) expectations

 

3.       Behaviours noticed by non-autistics, the differences that are of concern to them. For instance:

• Intense
• Task-oriented
• Not much influenced by social norms
• Don't gather and report social information
• Difficulty taking many typical adult preoccupations and conversations seriously
• Little interest in things just because they are fashionable or popular
• Passion for equality and justice
• Can be calm and practical in a crisis
• Prefer predictability in activities rather than spontaneity

  

From DSM-5:

·       Persistent deficits in social communication and social interaction

·       Failure of normal back-and-forth conversation

·       Reduced sharing of interests

·       Failure to initiate or respond to social interactions.

·       Abnormalities in eye contact and body language

·       Deficits in understanding and use of gestures

·       Lack of facial expressions

·       Deficits in developing, maintaining, and understand relationships

·       Restricted, repetitive patterns of behavior, interests, or activities

·       Stereotyped or repetitive motor movements

·       Insistence on sameness, inflexible adherence to routines

·       Highly restricted, fixated interests that are abnormal in intensity or focus

·       Hyper- or hyporeactivity to sensory input

·       Unusual interest in sensory aspects of the environment

 

4.       Compensations, Survival Strategies, Mental Health Problems/Symptoms arising from the struggle to survive in a world ill-adapted to autistic needs. For instance:

• Generalised anxiety
• Social Anxiety
• Depression
• Complex PTSD
• Low Self-Esteem
• Masking
• Loneliness
• Withdrawal, isolation
• Suicide attempts
• Autistic inertia
• Overload, shutdown, meltdown
• Burnout
• Eating disorders
• Gastro-intestinal problems, and other psychosomatic symptoms

 

The problem is, of course, that most people’s view of autism is backwards. They are very familiar with the association of autism with mental health problems and life struggles (Layer 4), as well being fairly familiar with the biased type of description found in Layer 3. This leaves them stuck in the disorder-focused view of autism.

They may have some distorted notion of Layer 2 (healthy, functional behaviour from the point-of-view of autistic subculture), and only the vaguest notion of Layer 1 (the true inner reality of what it is like to be an autistic person).

There’s a lot of work to be done…