The Experience of Autism from the Inside

I write this post with a great deal of caution.  I am going to attempt to flip the script on how autism is often described.  Rather than a set of outward behaviors, I am going to attempt to describe autism from the standpoint of the inward sensory experience.  This is fraught with all sorts of pitfalls, not the least of which is that every person is unique, and every person, while their experience may in many respects be identical to someone else’s experience, will frame that experience in relation to different memories, different language, and different emotions.  To speak in a generalized way of an inward experience of autism is almost guaranteed to fail from the start.

But I’m going to make the foolhardy attempt nonetheless.  Here’s why.

Autism is diagnosed on the basis of clinical observation and assessment of external behaviors.  While the understanding of the genetic origins of autism are growing, and while other medical markers such as functional MRI brain scans, are also helping advance the knowledge of the autistic brain, the fact remains that we do not as yet have definitive biological markers by which to diagnose autism.  There is no blood test for autism.  So, the clinical diagnosis of autism is from the standpoint of related behaviors.

But these behaviors are assessed in terms of deviations from what is considered normal.  They are assessed from the standpoint of deficits, deficiencies, and disability.  It is, after all, labeled Autism Spectrum Disorder.  And while this medical model of autism may be our only way currently of diagnosing autism, it creates and furthers social stigma.

After spending three-fourths of this calendar year researching autism, from clinical books to lectures, to persona memoirs and YouTuber videos, to interacting with autistic persons, I have come to see that the experience of autism from the inside is a richer and more beautiful world than it is viewed from the outside.

But while I’m going to offer this viewpoint and ask you to consider it as a new framework for your own understanding of autism, I do need to state the obvious.  I do not speak for any autistic person let alone for all autistic people.  But I care about autistic people, having researched autism and met some people with autism online, and I care about their well-being.  I am aware of the stigma associated with autism, and I would like to play a part in reducing that stigma.

I also recognize that autism is a spectrum, and that my descriptions below will probably map on more closely to those autistic persons who are able to speak for themselves, perhaps live independently and have lesser support needs than other of their peers with autism.

And while I will be focusing on sensory experiences below, and my descriptions will steer toward sensory “over-“sensitivity, sensory “under-“sensitivity is also part of the autistic experience. This post is already quite long, so I’ve eliminated discussions around those differences in sensory avoidance and sensory seeking.

One further clarification: There is a debate in the autism community about what sort of language to use in describing people with autism.  Many, perhaps most, of the people diagnosed with Autism Spectrum Disorder (ASD) prefer to be referred to as “autistic,” which signifies a personal identification with their diagnosis.  Others prefer to be described as a “person with autism,” which signifies that they are a person first, and that autism, while a significant part of their life, is not their sole identity.  I will switch back and forth in the terminology so as to accommodate both preferences.

As noted above, autism is diagnosed based on clinical observation of behaviors.  So an autism diagnosis is based on how much the person differs from the norm in key clinical ways.

In a social setting an autistic person might stand out for being alone, rocking in a chair, perhaps wearing noise canceling headphones, and focused on a particular object or activity (a “restricted” interest).  When interacting with others, they may stand out for how they use their voice, or use repeated language, for their “rudeness” or their lack of eye contact.

But put that same autistic person in a room by themselves, with appropriate lighting and noise levels, surrounded by the objects of their special interest, and they may appear indistinguishable from a neurotypical person in the next room.

Similarly, put an autistic person in a room of autistic peers and while the overall behavior of the group might seem different than neurotypical group in similar settings, their behavior with one another will be more natural (in autistic terms) and “relaxed,” than if the group was mixed. Their ability to relate to one another, in the ways that autistic persons relate, is no less than neurotypicals relating to neurotypicals in their neurotypical way.

My point is simply this: the experience of an autistic person as a human being is a human experience.  It is not one of deficit, per se.  If it is an experience of deficit, it is not because the autistic person is autistic, but because the social surroundings of the autistic person are not made for him or her.

And that is because persons with autism have a slightly different neurology than their neurotypical, non-autistic peers.  That neurology processes the various sensory stimuli and data of their environment differently.  And it is that different, though otherwise healthy, processing that makes the autistic experience what it is and that contributes to the perceptions of deficit and disability.

Autistic neurology and the sensory processing that makes persons with autism different from neurotypicals is the foundation for why autistic persons stim, why they have challenges with social matters, why they have routine and why they have focused interests. They are not autistic because they have trouble navigating relationships or social settings.   They are autistic because the autistic brain is wired in such a way that it receives sensory stimuli in one large overlay.  Autistic brains notice details, they see patterns.  If one might use this analogy: a neurotypical experience of sensory data might feel like the water from a garden hose; whereas for an autistic person it might feel like water coming from a firehose.

A neurotypical person may enter a room full of people at a social gathering and find the experience fun and engaging.  An autistic person enters that same room and is confronted by what may be an overwhelming amount of sensory stimuli and data to process.  In reality, both persons’ senses are registering the stimuli and data.  The murmur of a dozen conversations, perhaps the musical track of soft classical music being played, the lighting, the smell of the catered food and the perfumes and colognes, perhaps also scented candles or other room fragrances, and dozens of sets of eyes with which they make contact, the cramped space and potential light physical bumping and jostling, the feel of the clothing being worn, and the internal bodily signals of balance, location in space and coordinated movement.  

But, a neurotypical person, while all this is being registered by his or her senses, filters out (“doesn’t notice”) the vast majority of the stimuli and data.  An autistic person, due to their neurology, is processing everything all at once.  In a sense an autistic person notices everything.  And on top of it, now has to also negotiate small talk and relationships and social expectations.  If the neurotypical brain and the autistic brain could, like a computer, show how much processing power was being used in the moment, the neurotypical would hover down in perhaps the single digit or teen percentages as the software hummed along, whereas the autistic person’s usage would be at 90% or even maxed out.

It is that inward sensory experience, that is the foundation for autistic persons’ engagement with the external world, including the social world.  An autistic person is aware of far more sensory stimuli and data, and experiences those stimuli and data differently, than his or her non-autistic peers.  A non-autistic person might see a white company truck on the interstate and think, “Oh, that’s one of those X Company trucks.”  Big picture thinking, fitting the individual set of data into an overall framework.  An autistic person would see that same truck and think, “That’s the truck that parks in my apartment complex in the space three down from mine.”  An autistic person might not even know how they know it, might not even be consciously aware that the only difference in detail between the truck they see and other X Company trucks is the vehicle identification number they see on the right side of the back tailgate, a number they recognize from the parking space three down from their own.

The autistic sensory experience is one of rich detail and color and pattern and specificity.  It is an experience of the individual and the particular.  It differs from the neurotypical experience not in kind but of degree.  Neurotypicals notice details.  And autistics are capable of big picture thinking.  But each has their own unique way of processing that experience.  Autistic people, while they might have differing neurological connections than neurotypical people, use the same brain to process the same experiences, even if it is done differently.

From my encounters with autistic people, I think they might want to say to neurotypicals: I know how to have a relationship. I have emotions.  I have empathy.  My brain works fine.  In fact, my brain can outdo yours in certain ways.  I recognize patterns and details that you blithely miss and pass by, patterns that if we were living in cave man days could  save your neurotypical life.  But I just need to know the interpretive framework, the “rules,” the signs and signals.  You might blame me for not being able to relate well.  But perhaps if you took the time to understand me, to let me know the parameters of this social setting or of our relationship, you would see I’m quite good at relationships.  And your world would be enriched by my experiences, as mine would by yours.