Autistics live with fear, in a way that most neurotypical people (including myself) find difficult to imagine.  Anxiety impairs quality of life in up to 84% of all autistic individuals.  Roughly 40% suffer from some form of clinically significant anxiety disorder–as compared to 18% of the overall population of the United States.[1]  As Sparrow Rose Jones puts it:  “I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety.”[2]  Famous autistics like John Elder Robison and Temple Grandin–people who have written multiple books and appeared often in public– are by no means immune to this problem.  Although he hides it well, Robison confesses that “the fear and anxiety is always with me.”[3]  Grandin goes further.  She believes that “the principal emotion experienced by autistic people is fear.”[4]

Many of the behaviors that perplex neurotypicals arise out of fear.  Many–perhaps most–meltdowns, self-harm, aggression against others, eloping, and obsessive stimming can be attributed to a kind of existential terror, a feeling that the one’s very self is dissolving into a world of chaos and unpredictability.  Tito Mukhopadhyay’s memories of his early childhood include this kind of terror.  As a very young child, he became entranced by his shadow, which he understood as part of himself.  But at night, when his shadow disappeared, he would panic:  “I remember my voice screaming when I could not see my shadow anywhere around me.  I wondered whether it had left me here all alone.  I was afraid that I would lose my existence because my shadow had left.”[5]

To many autistics, the world is a wildly unpredictable, and therefore deeply frightening place.  Difficulties in reading and responding appropriately to cues from other people make it next to impossible to predict what will happen in social situations.[6]  For those readers who are neurotypical:  imagine how scary it would be if all the people we met wore masks that hid their facial expressions and voice filters that deadened variations in tone.  All the familiar clues that tell us whether the person we are dealing with is friendly or hostile, all the clues that tell us whether the words being spoken to us are meant literally, ironically, or sarcastically would be gone.  We could never be quite sure whether we were being accepted or rejected, praised or ridiculed, told the truth or being lied to.  This is the condition in which autistics must live every day.

But social anxiety, while extremely common, is only the tip of the iceberg.  Lack of predictability permeates every aspect of the autistic condition, including even experiences of the physical world and one’s own body.  Sensory issues are as much a source of fear as social interactions.[7]  A person with acute tactile sensitivities constantly worries about coming into contact with something painful;  another with sensitivity to sound may be so terrified by a sudden loud noise that she screams out loud.  A thirsty child may find himself suddenly unable to drink a favorite soda, without understanding that this time the soda was simply too cold for him to tolerate.  A meltdown follows, not only because the child’s desire for a drink has not been not satisfied, but, more importantly, because what had previously been a predictable source of comfort has now inexplicably disappeared.

Proprioception is awareness of the body’s location in space, in relationship to other objects.  Many autistics have relatively weak proprioception–they must live with constant worries about bumping into things or falling because they have misjudged distances.  Worse, they may sometimes not be able to feel their bodies at all—they experience an eerie sense of floating, of being ungrounded, that quickly becomes intolerable.  “It’s something I struggle with,” M. Kelter reports.  “My limbs, especially my arms, feel sort of disconnected, strange. It’s like they’re floating next to me, not really attached.”[8] These individuals may frantically seek deep pressure or jump up and down or purposely bang into walls, simply as a means of locating their own bodies.

Interoception, on the other hand, is awareness of the body’s internal processes and states–the ability to feel one’s own breathing, tell whether one is cold enough to need a coat, identify a physical sensation as hunger or pain.  “Many autistic people have dampened or muted interoception. We just don’t seem to notice what’s going on in our bodies until it reaches a level that other people would find intolerable. And often when we do notice it, it goes from ‘oh that’s happening’ to intolerable really darn fast,” notes Cynthia Kim.[9]  Poor awareness of bodily states can have dangerous consequences in the real world:  the person with hypointeroception (lack of ability to detect physical states) may forget to eat or sleep or obtain needed medical care.  It is not surprising, then, that mysterious bodily sensations—or the lack of any bodily sensation at all–may cause anxiety. But interoception is also closely tied to self-awareness and emotion.  The inability to sense how one’s own body feels right now or to predict how it will react in the future creates a fearful sense of one’s very self as insubstantial and fragile, easily disrupted or destroyed.  More on this in the next post.

[1]  See also Francisca van Steesel, Susan Bögels and Sean Perrin, “Anxiety Disorders in Children and Adolescents with Autism Spectrum Disorders:  A Meta-Analysis,” Clinical Child and Family Psychology Review 14: 3 (2011), 302-17.

[2] Rose Sparrow Jones, “Anxiety and Mental Health Accessibility,” from the Unstrange Mind blog, :  https://unstrangemind.wordpress.com/2016/05/05/anxiety-and-mental-health-accessibility/.

[3] by John Elder Robison, “Autism and Fear,” Psychology Today 2/8/2011:  https://www.psychologytoday.com/blog/my-life-aspergers/201102/autism-and-fear.

[4] Cited by Robison (see note 3) and by Liz Becker, “Fear and Autism,” on the Autism Support Network blog:  http://www.autismsupportnetwork.com/news/fear-and-autism-2478922.

[5] Tito Mukhopadhyay, How Can I Talk If My Lips Don’t Move?  Inside My Autistic Mind (New York, 2008),

[6] An eloquent expression of this anxiety can be found in the poem “Terrified of People,” by autistic teenager Iain Kohn:

https://themighty.com/2016/01/why-i-am-terrified-of-people-as-an-autistic-teen/

[7] Judy Endow, “Fear, Anxiety, and Autistic ‘Behavior’,“ on the Aspects of Autism Translated blog:  http://www.judyendow.com/advocacy/fear-anxiety-and-autistic-behavior/.  Endow notes:  “Because we do not have a way to predict if, when or how our bodies will serve us (or not!) it is quite common for autistic people to have some level of ongoing fear and/or anxiety.”

[8] M. Kelter, “The indefinite, luminous curve,” on the Invisible Strings blog:  http://theinvisiblestrings.com/the-indefinite-luminous-curve/#more-1225.

[9]   Cynthia Kim, “Interoception:  How Do I Feel?” on the Musings of an Aspie blog:  https://musingsofanaspie.com/2013/07/03/interoception-how-do-i-feel/