Exposure Anxiety as part of Tourettes?

© Donna Williams

In my book, Nobody Nowhere and the books that followed, I wrote about information processing problems: meaning deafness, meaning blindness, having no simultaneous sense of self and other I wrote about how, in the absence of the ability to keep up with interpretive thinking, I was highly sensing, extremely developed in the ability to map pattern, theme and feel.

Mostly I wrote about emotional fits and being emotionally spastic , caught up in tic-like involuntary avoidance, diversion, retaliation responses which imprisoned me in an invisible cage.

I wrote about the rules of this involuntary self protection mechanism and how I found that if I could distract myself out of conscious awareness, I could sometimes stop these involuntary responses shutting me down and contorting my communication and behaviour. I wrote about mechanisms such as 'can't do it as myself', 'by myself' or 'for myself' and all the strategies I employed (which made me look just as wacko) to try to get around these 'tics' including the fact that attention and praise exacerbated the condition and, like generally happens with Tourette's tics, any external directly confrontational attempts to suppress these responses only made them more ingrained and severe.

I feel that the emotional fits of what was likely undiagnosed Rapid Cycling Bipolar in infancy, certainly caused my Exposure Anxiety to TARGET any and everything which would initiate communication and interaction which might lead to sensory or emotional over stimulation (i.e. eye contact, directly confrontational verbal communication, the demonstration of self help skills). But I think that this alone would have lead to a phobic rather than Tourette's style tics response. I think it was the addition of Tourette's which cemented these Exposure Anxiety avoidance, diversion, retaliation responses as behavioural tics.

I was hospitalised at the age of 2 1/2 because my parents suspected I was deaf and had leukaemia. I appeared not to response to sudden noises or language (though I could echo to myself hour long strings of the voices around me), bruised at the slightest touch, had bleeding gums and my eye lashes came out in clumps. I was also coughing up blood. Pretty alarming stuff.

I was sent home after three days and so the story goes, the impression was that I was 'psychotic'- though how a 2 1/2 year old can be psychotic is beyond me.

The reason for this analysis was that they'd found I was not in fact deaf and didn't have leukaemia but the coughing up blood had been because I was compulsively tensing my stomach muscles and coughing persistently against the force to the point I was coughing blood. Nobody said Tourette's Syndrome and Autism in the 60s was fairly unheard of.

I spent most of my life with involuntary and compulsive throat clearing, coughing, breath holding and clicking my inner ear muscles to the point my neck was always tense and noises. In between I had phases of compulsive lip biting, blinking, spitting, swearing, arm movements, throwing myself backward, clenching, face slapping, hair tugging, stomach punching, biting, repetitive word phrases, funny walks, grimacing, squealing, tapping and staring. Because I was by then labelled disturbed nobody said Tourette's Syndrome.

By the age of nine, OCD had been added to my repertoire and as well as the usual tics, I now had ritualised ones relating to number, symmetry and loss of control. And I was still having emotional fits and essentially largely meaning deaf and meaning blind.

As an adult, dietary intervention took care of 50% of my fleas but 50% remained. Finally a small amount of medication which treats bipolar, Tourette's and OCD put an end to my fleas and took the involuntary avoidance, diversion, retaliation responses of Exposure Anxiety with it. The information processing problems remained, though less now that the constant distraction, frustration and stress of fleas (and all the adaptations used to get around them) were now out of the way. So whilst I'm still Autistic I now don't 'suffer' from my ' Autism ' where before I did.

Tourette's, OCD and Bipolar are thought to co-occur in Autism at a rate of about 30%. The involuntary avoidance, diversion, retaliation responses of Exposure Anxiety and the strategies to get around them (which look just as autistic ) together with the information processing problems are generally taken as 'Autism' . What if the complication of treatable impulse control problems in infancy so undermines neurological development, gut function and immunity as to cause severe developmental delay and the information processing problems/differences which go with that? If we can stop portraying Autism as one thing and see it as a diverse combination of underlying conditions resulting in neurological, immunological, physiological and developmental impact we can perhaps treat the fleas which can so severely effect some of the most profoundly effect people with Autism and perhaps dramatically decrease the severity of their challenges.

What causes the involuntary avoidance, diversion, retaliation responses of Exposure Anxiety in Autism? Are these sometimes part of a progressive phobic state which can be turned around using an indirectly confrontational approach? Is this a natural response to chronic over stimulation and overload? Is this exacerbated by the sensory and emotional heightening of bipolar in infancy? Does this become tic like in the style of Tourette's, persistent, chronic and exacerbated by external attempts to stop it when combined with the chemistry of Tourette's or OCD? These questions have major implications for the widespread use of ABA and may indicate which people with chronic Exposure Anxiety Responses should either have their ABA program significantly altered to minimise the possibility of the ABA itself making these problems worse or whether a different type of program is more fitting. ABA is thought to help around 50% of people with Autism. I'm happy for those 50%. I'm concerned for the 50% it isn't working with. Even more so, if Exposure Anxiety responses can become true Tourette's style tics, I'm concerned that for some of that 50% conventional ABA might theoretically, by the very nature of how Tourette's tics work, be making them worse.