I invited some of my readers to interview me on particular books which had been helpful to them.  Kathleen chose to interview me about the book Exposure Anxiety; The Invisible Cage of Involuntary Self Protection Responses.  Here’s that interview:

KATHLEEN:
I want to start by thanking you for the the books you have written that give many of us a window into the world of autism “from the inside out.”  Those of us with family members, especially children, on the spectrum, find that extremely enlightening.  I found a lot of helpful insight especially in your book Exposure Anxiety.  Frankly I consider your self-observations and reports in Exposure Anxiety to be absolutely stunningly classic accounts of your (and others’) state of mind and emotions and heart, Donna. Very few people have EVER been able to articulate their experience so well. You have been giving of yourself in a way that is, as I said, so helpful to others. Your writing in itself is art.

Here are some questions about it, they are partly based on my experience with the grandson with autism whom I am homeschooling, but also with my experience and training over the past thirty years in pastoral counseling:

First of all, in your book(s), you seem to me to be describing a kind of dissociative experience–an experience where different parts of the self are split off from one another.  In non-autistic people, dissociation is often a result of trauma of some kind.
(1) Do you think that the differences in sensory perception in autism, including those induced by chemical exposures or food intolerances, along with the difficulty in bonding even with safe caregivers, make it easier for the person to experience trauma even from experiences that might not be so shattering for neurotypical people–and can this cause an actual dissociative disorder (not psychosis or schizophrenia)?

DONNA WILLIAMS:

Good question Kathleen.  I’m assuming you’re talking about both involuntary avoidance, diversion and retaliation responses in chronic Exposure Anxiety as well as the compulsion to hide within characters or characterisations, even to the point of ‘splitting’.

Well, in my view, yes, certain chemistry extremes can contribute.  For example excessive levels of Noradrenaline in the brain can cause chronic anxiety states which can manifest in a range of ways – Generalised Anxiety Disorder, Separation Anxiety, Selective Mutism, Exposure Anxiety, perhaps even so far as disassociation or splitting.  For example such imbalances ar believed able be set off in those with chronic inflammatory states where the integrity of the blood brain barrier has become weak and undigested proteins and viruses for example can cross into the brain setting off imbalanced brain chemistry.

Certain metabolic disorders and food intolerances might exaccerbate those effects.  For example, the cocaine like effects of Salicylate intolerance will usually greatly increase existing anxiety states in those with salicylate intolerance and this can be made worse through ingesting fluoride which is known to increase levels of salicylate toxicity.

Regarding bonding, yes, I have found that high levels of Exposure Anxiety are not just reported most highly in the Fragile X community, but also among those who have experienced persistent spouse abuse.  Further, I believe those with Reactive Attachment Disorder are more prone to Exposure Anxiety than most.  What was interesting was to find how those with significant Agnosias, such as Face Blindness, Social Emotional Agnosia (inability to read facila expression/body language), Verbal Agnosias (meaning deafness), Visual Agnosias (object blindness/context blindness) and Body Agnosias (difficulty processing body messages and touch) were more prone to things like Separation Anxiety or Reactive Attachment Disorder – Bonding issues.   This shouldn’t surprise us because if a child is deaf-blind and no accessible means of connecting is used, these children will also experience great isolation and associated bonding issues until accessible means of connecting are used.

And that leads to the last part of your question.  Those with significant agnosias, such as Visual Agnosias including faceblindness, may be more likely to deeply bond with their reflection or with special objects, places, routines than with people.  So when losing those things, these could be experienced as loss and trauma in ways non-autistic people would probably never experience.

KATHLEEN:

You recommend an indirectly confrontational approach to children with autism. It is reminiscent of Maria Montessori’s “prepared environment,” in some ways, not forcing compliance, but allowing the child to explore learning from sheer curiosity and self-initiative.
(2) How can we help educators understand that constant questioning and testing,  is not teaching or helping the students learn, when the whole educational establishment seems to be stuck on this concept and practice?
DONNA WILLIAMS:
For me it’s fairly simple.  If someone has Social Phobia, is it sensible to respond to that with being persistently socially invasive?  If someone has acute and chronic Exposure Anxiety is it sensible to keep forcing their conscious awareness if this keeps triggering disassociation, self injurious behaviours and drives someone into a progressively deepening state of involuntary avoidance, diversion, retaliation responses?  If someone is willing to progressively exclude foods or even self starve or avoid bowel movements to the point of needing hospitalisation in response to progressive social invasion, does it make therapeutic sense to stay fixated on them and pursing them?

See, the socially invasive directly confrontational, force-compliance style approaches are used by those who don’t understand what they’re actually doing to these type of people because they’ve been taught that they are normal and those who can’t cope are pathological and need normalising.  Psychology teaches them that pathology lays in the individual.  It doesn’t look at the situation sociologically… that a pathological PATTERN can arise in interaction styles in which a style is pathogenic to the recipient.  If they understood they were forcing a ‘dog’ reality (think eager, pursuing, socially invasive dogs) onto ‘cats’ (think socially reluctant, socially anxious, socially reticent, solitary) then they’d have to wonder if ‘speaking cat’ just might help those ‘cats’ to behave in a less chronically socially defensive manner.

One of the problems is that those drawn to teaching are often A-type personalities and mainstream schools are designed to deliver a cheap one-size-fits-all education to a social majority as cost effectively as possible.  If the teacher can’t speak dog to the dogs and cat to the cats (or is unwilling to) then there’s usually few enough of the cats for any failure to reflect badly upon them and their lack of flexibility.

KATHLEEN

3) One of the mechanisms of Exposure Anxiety, or perhaps of coping with it, that you describe from your own experience is echopraxia. And it seems to me that what you would recommend as a healthy place for a child experiencing this, would be to place him or her with both peers and adults who practice non-hierarchical respect and self-care and self-owning behaviors.
DONNA WILLIAMS

Well put.  Yes, non-hierachical respect gives a feeling of equality and freedom, yet it has clear boundaries too.  Modeling self care and self owning behaviours is part of demonstrating that the environment is a classroom but a non-invasive one, that nobody’s happiness is dependent on any other person’s progress, that life goes on regardless and that finding want and personal motivation actually matters. Ghandi wrote – be the change you wish to see.  And being self-owning, modeling self-care, is part of being that classroom, a non-invasive, non-controlling classroom in which the lessons are so important the teacher, themselves, models their use in his or her own life rather than pursuing the student as some pliable object they have a right to contort based on values the child hasn’t yet acquired.   Addressing on the object-issue not on the person, modeling not teaching, keeping things small doses and always leaving the person WANTING more are some of the key tools in helping those with Exposure Anxiety turn around compulsive avoidance, diversion and retaliation responses and discovering THEY are the ones who want to seek instead of defend.

KATHLEEN:

(4) If instead the emphasis is on compliance and control–whether by bullying or manipulation and intentional conditioning, might the child instead learn to try to control others in a compulsive way; if so, how can this be avoided?

DONNA WILLIAMS:

People control each other subtly all the time.  Even the family cat or dog does so.   At one level we call it non-verbal communication, at another we call it Passive-Aggressive control tactics.  One doesn’t have to be divisive or even consciously aware to do these PATTERNS.  Cats, dogs, horses have done these tactics. I do think that we reap what we sow.  If we bully, manipulate, condition children through an emphasis on compliance and control, then we will get away with this with certain passive personalities, but with other personalities, we will end up reaping what we sow.  The same tactics can be ultimately used back on us or on others.  So using an approach which sets up a situation in which someone can discover personal WANT to do something, is less likely to lead to the control-counter control cycle.

KATHLEEN:

In those children and adults with gluten, casein, phenol and salicylate intolerance and immune deficiencies, you recommend dietary changes to reduce sensory overload and stress, and dietary supplementation. Many parents would agree wholeheartedly with the gains seen in their children when this is accomplished. But they are more fearful of the long-range consequences of the new drugs like Seroquel or Risperdal, especially when begun in childhood. In some cases there is even a fear of simple brain stimulants like Ritalin for hyperactivity or impulsivity, and these medications have a very long record of safety.
(5) Of course you are not a physician or psychiatrist, but what can you say to this fear of medications from your experience, your own and your consulting work?

DONNA:

It’s an important question.  Firstly, a healthy diet is important to any child with learning disabilities or developmental delay.  Secondly, not all people on the autism spectrum have gut, immune or metabolic disorders so we have to distinguish the percentage in this group from those who aren’t.  Thirdly, nobody should be subject to dietary interventions unnecessarily.  If a 30 day trial shows no signs of improved health and development, there is no point sticking to dietary interventions which may not benefit that person.  Regarding medications there are many problems.

One is that medications don’t treat autism.  They treat imbalanced brain chemistry that results in mood, anxiety, compulsive, rage and attention disorders.  These need to be distinguished from personality traits and clashes, distinguished from the fallout of unaddressed sensory-perceptual and communication disorders.  These need to be distinguished from environmental mismatches.  And where there are underlying gut/immune/metabolic disorders these should be addressed first.

Another issue is that medications are not always right.  Antidepressants and stimulants have been given to those with Bipolar, making them dangerously manic. Levels of medication have been increased rather than the appropriateness of the medication itself being questioned.  Often, after other interventions, no medication or only very minor doses are required to manage co-morbid issues.

Then there’s the balance of side effects with benefits.  Many psychiatric medications have rare side effects when given in considerable ongoing doses.  Yet, for those with IgA deficiency (which is worsened by chronic stress) removing the burden of chronic stress on gut and immune function may mean the difference between being dead by one’s 30s from the complications of immune deficiency or having a normal life span helped by a small amount of medication.  Similarly, 15-20% of adults with untreated bipolar die through suicide or misadventure, so that’s a big side effect of taking NO medication when one needed it.  My view is that most young children with co-morbid psychiatric challenges will have these significantly decreased through environmental adaptations, nutritional supplements which aid mood balance, anxiety management and information processing and a diet which gives them balanced nutrition and reduces burden on any existing gut, immune, metabolic disorders.  Saying that, if someone has life or health threatening behaviours due to their co-morbid disorders, then medication may be important, even if they are quite young.  I have known children who are starving themselves, making themselves vomit, are severely self injurious or excessively violent to others and if all has been tried for them and they can experience some degree of equilibrium and freed up development with the aide of a sensible low dose of APPROPRIATE and MONITORED medication, then I would not be the kind of dogmatic zealot to oppose their right to that opportunity for help on the path toward progressive self management.

KATHLEEN:

6) And here’s a very open-ended question: What would you recommend as the best avenues to help a child with autism and Exposure Anxiety find joy and freedom and significance or value in his or her life?

DONNA WILLIAMS:

The most important step is for the person to discover WANT.  One can’t learn to want if one is constantly geared for defense in the forms of avoidance, diversion, retaliation responses.   So the key is  to so counter physical certainly of impending invasion, leave the child able to discover, observe without threat of social invasion to the degree they experience WANT, and fail to pounce on their initiations to the degree they learn that WANT and INITIATION to not lead to social invasion.  The key is to become a facilitator of freedom and the expression which ultimately flows from trust of that freedom.  Being a facilitator, not a puppet master is a journey for non-autistic people working with those with Exposure Anxiety.  In this sense it is EQUALLY about THEIR own journey in ‘speaking cat’ as it is about how to help the person with Exposure Anxiety become a less feral, more tame ‘cat’.

Thanks for the interview.

Warmly,

Donna Williams, Dip Ed, BA Hons

International author of 9 books in the field of autism, lecturer and autism consultant.