Being diagnosed with autism and with Dissociative Identity Disorder I reflected on the hundreds of children and adults I’ve worked with as an autism consultant since 1996. Given dissociation is such a natural process in young children that DID cannot reliably be diagnosed in early childhood, was dissociation something only non-autistic children did? If autistic children also farted, yawned, ate, toileted, slept, breathed, did they also have this natural ability to dissociate? Could their autism be complicated by issues of dissociation, depersonalisation, derealisation? And what might these look like in someone with autism?

First, some definitions:

What is dissociation?

Dissociation is a word that is used to describe the disconnection or lack of connection between things usually associated with each other. Dissociated experiences are not integrated into the usual sense of self, resulting in discontinuities in conscious awareness (Anderson & Alexander, 1996; Frey, 2001; International Society for the Study of Dissociation, 2002; Maldonado, Butler, & Spiegel, 2002; Pascuzzi & Weber, 1997; Rauschenberger & Lynn, 1995; Simeon et al., 2001; Spiegel & Cardeña, 1991; Steinberg et al., 1990, 1993). In severe forms of dissociation, disconnection occurs in the usually integrated functions of consciousness, memory, identity, or perception. For example, someone may think about an event that was tremendously upsetting yet have no feelings about it. Clinically, this is termed emotional numbing, one of the hallmarks of post-traumatic stress disorder. Dissociation is a psychological process commonly found in persons seeking mental health treatment (Maldonado et al., 2002).

Dissociation may affect a person subjectively in the form of “made” thoughts, feelings, and actions. These are thoughts or emotions seemingly coming out of nowhere, or finding oneself carrying out an action as if it were controlled by a force other than oneself (Dell, 2001). Typically, a person feels “taken over” by an emotion that does not seem to makes sense at the time. Feeling suddenly, unbearably sad, without an apparent reason, and then having the sadness leave in much the same manner as it came, is an example. Or someone may find himself or herself doing something that they would not normally do but unable to stop themselves, almost as if they are being compelled to do it. This is sometimes described as the experience of being a “passenger” in one’s body, rather than the driver.

What is depersonalization?

Depersonalization is the sense of being detached from, or “not in” one’s body. This is what is often referred to as an “out-of-body” experience. However, some people report rather profound alienation from their bodies, a sense that they do not recognize themselves in the mirror, recognize their face, or simply feel not “connected” to their bodies in ways which are challenging to articulate (Frey, 2001; Guralnik, Schmeidler, & Simeon, 2000; Maldonado et al., 2002; Simeon et al., 2001; Spiegel & Cardeña; Steinberg, 1995).

What is derealization?

Derealization is the sense of the world not being real. Some people say the world looks phony, foggy, far away, or as if seen through a veil. Some people describe seeing the world as if they are detached, or as if they were watching a movie (Steinberg, 1995).

from: http://www.isst-d.org/education/faq-dissociation.htm#dissoc

Given children with autism often battle with more intense frustration, disability, environmental clashes and experience more intensive, often incomprehensible early interventions than non-autistic children, would autistic children dissociate even moreso than non-autistic children?

Even more pertinent is the question whether, like non-autistic children do, would autistic children naturally outgrow dissociation to become whole, integral selves? What would that look like in an autistic child at age 10, age 15, age 25? Would we deem them more autistic because of that, autistic AND emotionally/behaviorally disturbed?

Let’s consider some of the 20 items on the checklist for dissociative disorders in children:

2. Child goes into a daze or trance-like state at times or often appears “spaced-out.”
3. Child may go from being shy to being outgoing, from feminine to masculine, from timid to aggressive.
4. Child may forget the names of friends, teachers or other important people, loses possessions or gets easily lost.
5. Child loses track of time or becomes confused about when something has happened.
6. Child shows marked day-to-day or even hour-to-hour variations in his or her skills
7. Child shows rapid regressions in age-level behavior
8. Child has a difficult time learning from experience, e.g. explanations, normal discipline or punishment do not change his or her behavior.
10. Child refers to himself or herself in the third person ( .g. as she or her) or when talking about self, or at times insists on being called by a different name.
11. Child has rapidly changing physical complaints such as headache or upset stomach. For example, he or she may complain of a headache one minute and seem to forget about it the next.
13. Child may deliberately injure self at times.
14. Child reports hearing voices that talk to him or her. The voices may be friendly or angry and may come form “imaginary companions” or sound like the voices of parents, friends or teachers.
16. Child has intense outbursts of anger, often without apparent cause and may display unusual physical strength during these episodes.
17. Child sleepwalks frequently.
18. Child has unusual nighttime experiences
19. Child frequently talks to him or herself, may use a different voice or argue with self at times.
20. Child has two or more distinct and separate personalities that take control over the child’s behavior.

from: http://www.energyhealing.net/dissoc.htm

Many children with autism will not be in ongoing experiences they find invasive, overwhelming or traumatic. But others will. Would we cast off an consideration of additional complications of entrenched dissociative patterns because we could not imagine our good intentions as traumatic?

Perhaps we can’t imagine that experiences like entrapment without communication, judgments of our intelligence based on involuntary behaviors or disability, social segregation, discrimination, bullying, intensive and intrusive interventions, restraint and aversives, invasion of our bedroom by therapists who physically controlled and filmed us, being mourned over as if ones self did not yet exist and the like, could collectively amount to trauma?

If we were imprisoned at the hands of captors who did the same to us between age 2-5 would we say the same? But if you were a faceblind child who saw your parents in visual fragments, heard their speech without meaning, had no neurological capacity to make sense of their emotional expression or visually fragmented, seemingly meaningless actions, would you glean their good intentions to ‘save you’? And if not, how might this shape dissociation? Would you be worse for it, or somehow appear to gain functions because you had had to function in spite of dissociation just to get rid of these inexplicable intrusions?

What if you were also born with gut and immune disorders, had to regularly undergo injections, probing by gastroenteritis, be hooked up to IV or swallow 20 pills a day with no comprehension of why? Even worse, what if some carer, determined to ‘cure’ your autism presumed wrongly that because of your diagnosis you were one of this group when you had in fact never had these health disorders? What would be your journey with dissociation? Would it present you as even more autistic? Would you appear less so because finally that appeared to get these people off your case?

Uncomfortable questions but important ones.

How much of what presents as ‘stimming’, ‘self hypnosis’, ‘detachability’, sensory hyposensitivity, no pain response, involuntary avoidance, diversion and retaliation responses, extremely divided abilities, inability to consistently repeat a function we had an hour ago or last week, aimless wandering, inexplicable self injury, sudden inexplicable meltdowns, sudden switching, self directed chatter …. might we dare to at least consider in the context of both autism AND dissociative processes?

Given that dissociative disorders are on a spectrum from mild to moderate (such as DD-Nos) to severe (such as DID) and given that a child who recovers from an early dissociative disorder can then reignite it due to trauma in mid childhood, could this play any part in regressions and breakdowns of autistic children who were subject to traumatic bullying, repeated restraint or invasive and aversive therapies? If so would there come a day where we might check for dissociative disorders as a co-morbid disorder in those with autism so we can address it, even (perhaps especially) in functionally non-verbal children instead of presuming the whole package to be just ‘the autism’?

Could it be that someone with autism who is already exceptional at dissociating, has developed it to a degree, depth and duration beyond non-autistic children who is then severely abused or bullied may be more likely to develop DID in addition to their autism? By contrast, someone without autism who is also adept at the natural capacity to dissociate which is present from age 2-4 if they were severely abused at that time could find themselves dissociating involuntarily as a protection against trauma. Could it be there are those with autism who regularly dissociate volitionally through stimming, those for whom this has become habitual, addictive and involuntary, those for whom it is triggered by overload and social invasion and those for whom it was made worse via things like bullying?

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

You can find more info at my website http://www.donnawilliams.netincluding my consultation page for DID where I offer online Peer Support.