I often hear this question, which might be rephrased as, “Why does my child stim, and what can I do to make him stop?” This is a provocative question, which goes to the heart of many of the issues with which families with children on the autism spectrum struggle.
There are lots of answers or remedies to the stimming problem, which indicate its complexity. Most of the answers are likely incomplete, off target, limited to one child, or simply incorrect. Before exploring the challenges of finding remedies, let’s explore the nature of stimming- that is, self-stimulatory, repetitive, stereotypical and apparently meaningless behavior.
The term, stimming seems to be primarily reserved for autistic spectrum kids. The question itself points to an error in our thinking, suggesting that we may believe that stimming is caused by “autism.”
This is a mistake in thinking. For example, consider common behaviors in “neurotypical” people, such as nail biting, chewing on erasers, hair twirling, pencil tapping, interjecting “uh’s” or meaningless phrases, knee bouncing and other behaviors. These are self-stimulatory, repetitive, stereotypical and apparently meaningless behaviors common to most everybody in one form or another. Keep this in mind as we probe deeper into the mysteries of what drives stimming in people with autism spectrum disorder.
Why does a child stim? It seems most likely that he stims for the same reasons you or I may stim: as a response to stress, excitement, boredom, or anxiety – perhaps as a distraction or self-calming activity.
I believe that the most important gift we can give people with autism is to realize, deeply, that they are simply people, and to thus relate to them as human beings with an affliction rather than to relate to them as an “autistic.” Although your child may stim because of the effects of autism, it’s a mistake to say that “autism” makes your child stim. “Autism” is not a disease or a diagnosis or a cause. Rather, it is a classification based on the “output” of the person struggling with injuries and imbalances, as yet not fully understood (as to cause, treatment or prognosis). It doesn’t get us anywhere to attribute stimming to autism, while it is very helpful to look at stimming as the output of a human being plain and simple.
Stimming as a Form of Communication: When we observe the conditions which increase stimming behavior, the common precursors are excitement or distress: that is, a positive or a negative situation for the child. And the stimming is a behavior which can tell us more about the inner state of this person. While the stimming may embarrass or trigger us because it looks weird (like hand flapping, spitting or shrieking), it is an expression of something going on in the child. It is a communication.
I think of stimming in kids with ASD as a form of communication which is trying to tell us something in the moment. And therein is an opportunity to connect or meet a need or learn more about their inner world. This is eloquently taught in the SonRise program (and Raun Kaufman’s book Autism Breakthrough).
Thus, the first angle of approach to mitigating stimming is from a psychosocial and environmental perspective. Receive stimming as a form of communication, and seek to connect with the person who’s “sending,” by stimming. Listen, observe, respect their process, get down to their level physically and psychically, try responding in kind or imitating the behavior to demonstrate your availability. Try offering food, water, a change in scene, massage, a hug or a squeeze, covering the ears or eyes. Ask yourself the questions: Is your child constipated, itchy, exhausted, bored, overwhelmed, in sensory overload, afraid, cold or hot, etc.? If we identify a suspected trigger or as a sign of too much or too little of something, we can try to offer relief. As we get better at understanding her communication, and as she becomes more adept at communicating her needs, we see lessening of her stimming behavior.
Stimming as Symptom of Physical Imbalance: I also think of stimming from a medical perspective as an expression of an overexcited nervous system which has difficulty with self-calming or self-regulation. This may show up also as sleep disturbances, sensory issues, hyperactivity, distractibility, phobias, general anxiety, OCD issues, along with stimming. In this perspective, stimming may be viewed as a “driven” behavior, beyond the control of the child. The findings of brain inflammation and activation of excitatory pathways (with glutamate/aspartate upregulation) in autism are relevant. With imbalance in excitation/inhibition, it’s like the on switch is stuck “on,” and the off switch is ineffective.
In this regard, it’s productive to explore the Cell Danger Response (CDR) described in detail by Robert Naviaux (Naviaux RK Metabolic Features of the Cell Danger Response Mitochondrion. 2014 May;16:7-17. doi: 10.1016/j.mito.2013.08.006. Epub 2013 Aug 24 Metabolic Features of the Cell Danger Response). The CDR is a complex choreography of changes orchestrated by the mitochondria in response to a perceived hostile threat. It is a protective and common occurrence in animals and people, activating our defenses to protect us.
When the CDR is activated, the immune response is upregulated, inflammation is produced, communication between cells is curtailed, and the complex processes of healing and repair are put on hold. One of many effects is that inflammation turns up excitatory chemistry leading to the excitatory/inhibitory imbalance described above. In normal conditions, the CDR is turned off when the perceived hostile threat (germ, allergen, toxin, and also sensory overload, feeling of danger, over-load or deprivation of nutrients, electromagnetic fields, etc.) has abated. This goes beyond fight or flight, as all of the biochemical, metabolic, neurologic, immune, and intestinal abnormalities detected in autism have been identified as potential byproducts of CDR activation. Also, there is strong evidence that the CDR is chronically turned on in ASD.
Chronic CDR activation, causing excitatory overdrive, may thus trigger stimming behavior. So beyond working on the psychosocial issues described above, we need to do all we can to help the child’s system turn off the CDR.
This involves exploring and treating medical causes by addressing the following questions:
does the child have an infection, an allergy or intolerance, a toxic burden?
1) Is the child getting too many carbs, or too little protein, fat or fiber?
2) Is he sleep-deprived or apneic at night?
3) Is there a hormone imbalance (especially thyroid, adrenals, insulin)?
4) Is the child in pain from constipation, inflammation or gut dysbiosis?
5) Is he deficient in a micronutrient (zinc, iron, selenium, molybdenum, magnesium, D, B12, folate, omega three, A, flavonoids, carotenoids, etc.)?
6) Is he getting too much of a micronutrient such as copper, synthetic folate, trans fat, omega 6, etc.?
7) Is the child over-exercised or under-exercised, or lacking nature exposure?
8) Is his DNA expression compromised by altered methylation, toxic adducts, or electromagnetic exposure?
The list goes on; these are the questions we explore in a “biomedical” evaluation (quotes because it ought to be no different in a “medical” evaluation, but this doesn’t seem to be the case).
If we identify and correct a significant contributor to one of these issues, there may be a big improvement in stimming. We may excitedly post our triumph online and promote it as a treatment for either stimming, or “autism.” The remedy may even get studied as an evidence-based treatment for autism, and if shows significant benefit, join our therapeutic armamentarium. Yet the thinking is off; rather than for “autism,” the treatment is for an unmet need, and this child is showing us the benefit.
There’s no harm for others to try the intervention, as there are a limited number of triggers of the CDR, or of unmet needs; a limited number of ways in which we humans go off track. Some children will also benefit from the chosen remedy. But if we persist in thinking of autism as something which inhabits the child, or as a disease in search of a treatment, we’ll never get to the holistic/whole person approach which promotes whole body healing.
It’s artificial to separate the psychosocial/environmental from the medical, as all stressors contribute to the internal state of the person and to activation of the CDR. And so we seek to understand and address all the stressors, unmet needs, imbalances, overloads in our child. This is the path to self-regulation and healing.
In summary, stimming can be received as a form of communication, arising from distress or excitation. It may also be an expression of a system in excitatory overdrive from a variety of medical issues. Addressing the psychosocial/environmental triggers and the medical issues, both of which contribute to the inner state and to activation of the Cell Danger Response, can provide the best hope for our child to regulate and heal.