Until I was nine, I was largely meaning deaf (and mostly meaning blind) but it
wasn’t until I started to process three sentences in a row for (literal) meaning that I finally understood that this was a system that other people in the world were using (I’d been put on sedatives as well as zinc, vit C and multivit/minerals). They weren’t just playing with sound strings, they weren’t just entertaining themselves, it wasn’t some conspiracy to wind me up by expecting responses I couldn’t give to meaningless blah coming from their mouths. I still didn’t think of my body as ‘me’ but had had mostly stopped trying to pull my skin off though I still gave it more slaps and bites and body slams into furniture than the poor thing deserved. But this was always how it had been. The concept of ‘getting better’ wasn’t really there. There was also no simultaneous sense of self and other, I had one to the exclusion of the other, just like I could either express or receive but not simultaneously do both and was generally meaning deaf to my own communication so it trailed off into just about anywhere without me noticing.
At this age I was still having rages and mania as I always had, the hilarious
giggling fits, the wild flashing eyes, the climbing to great heights to be like a God over everything. I still got into ectasy over throttling myself and walked blissfully infront of moving traffic almost willing poor drivers to hit me for I felt invincible. Then something else appeared, in between the mania and rages, a crashing despairing depression which dominated for about two years.
The wild fluctuations combined with the sensory and emotional
heightening they brought with them and an inability to get consistent meaning
from my senses meant my Exposure Anxiety- my involuntary self protection
responses, by now had me fully in their grip and my behaviour and
communication was riddled with involuntary avoidance, diversion and
retaliation responses. It was the 70s, before high functioning autism was ever known about. I was seen as ‘disturbed’.
The imprisonment within self protection responses of involuntary avoidance, diversion and retaliation responses fed the rage and despair and the
freedom of the manic states were all the more ecstatic by contrast with the
imprisonment of the by now entrenched invisible cage of Exposure Anxiety
responses. On top of this I was compelled by the comfort of disappearing
into the oblivion of patterns to the point that doing many things became difficult without doing my rituals. I had to do things by even patterns, repeat certain phrases certain numbers of times, breath with absolute eveness, sleep in symmetrical perfection, avoid all lines on the pavement yet trace all lines and boundaries. I was hyperventilating when anything did not occur in even numbers or when the symettrical placement of anything was not perfect. The compulsive throat clearing, inner ear clicking, blinking, sniffing and spitting had always been there, but with everything else, these fleas had all got unbearably overwhelming. And of course there was the constant infections, at least every six weeks another ear or chest infection and by nine the juvenile arthritis had set in.
It would be another decade and a half before I got help for Salicylate
intolerance, dairy allergy, dairy and gluten intolerance, nutrient
deficiencies and finally the immune deficiency that was part and parcel of
what had become labelled Chronic Fatigue Syndrome but common to between
60-80% of people on the autism-spectrum (see Shattock, Sunderland University,
and Waring, Birmingham University) and a year later that the girl who’d been labelled deaf, stupid, disturbed and crazy would finally be diagnosed with autism (rather than Asperger’s because of the still existant language processing problems) at the age of 26.
And when finally diet and supplements and treatment for gut & immune problems
had finally decreased my ‘fleas’ and processing problems by 50% and I could
actually meet my own basic needs within more or less two hours of having felt
the need to pee, drink, eat, get a jumper (on a good day, a bad day could mean
so many involuntary avoidance, diversion & retaliation responses I’d get none
of these all day- and I was not a happy bunny when that happened). I dreamed
only of a day when I would get rid of the invisible cage of Exposure Anxiety
and that day came in the form of a small dose of medication.
So you’d think the story was over there. But when I tried to come off the
medication each time I lasted only 3 days before everything crashed. At first
the OCD, the tics and the Exposure Anxiety came back (together with attention
problems and decreased information processing), but eventually, these other
fleas were all absent and by day three what emerged now clear of its confusion
with anything else, was, plain and simple- a pattern fitting Rapid Cycling Bipolar
in which mood can swing extremely anywhere between every 40 minutes and
4 times a year. Surely whilst those who develop this in late childhood or onwards
would already have much of their development intact, surely some infants with constant fluctuations of extreme states of sensory and emotional overstimulation might find it difficult to develop sensory cohesion, consistent receptive language, a good realtionship to body connectedness and neurological integration necessary for consistant, cohesive and speedy information processing. This is not to say all children with autism have these challenges for the same underlying reasons, but its worth a thought for those who do.
Now, I remembered the ’emotional fits’ I’d had several times a day from about
the age of three, overwhelming emotional states with no volume control which
would crash down with no capacity to process anything coming in, not even that
my body was mine, where I was, who I was- all gone. These had been replaced
with with giggling fits, the self injurious lash outs, dangerous and manic
behaviour, even trying to jump from buildings, walking out in front of traffic, riding
on the outside of moving trams together with much funnier eccentricities.
The extreme, often surreal, often manic and impulsive behaviour
I saw in my parents growing up (especially my father who would likely fit a number of labels such as Dyslexic, ADHD and Bipolar) now makes a lot more sense to me.
But society teaches us to blame alcohol, poverty, lack of education. I was seen as a kid effected by wild circumstances rather than wild chemistry. Not all of us have autie spectrum families, but some of us do, and sometimes pretty extremely challenged themselves (since my own diagnosis and much moving on in the field, two children on my father’s side have got a formal diagnosis on the Autism spectrum, others with Crohn’s and Celiac).
Bipolar is thought to occur in around 30% of cases of ASD (even higher in
those with ADHD) and is genetically inherited. Perhaps it’s even more extensive considering that Rapid Cycling Childhood Bipolar is only now being recognised and found in some infants. It’s only recently that professionals have realised bipolar can effect children as young as in infancy and in children it’s usually Rapid Cycling Bipolar- the emotional spasticity I wrote about in Nobody Nowhere which even then I blamed to the development of the Invisible Cage I later came to call and write about as Exposure Anxiety (it is only one of many underlying causes of EA, but one of the most treatable). I only recently found out that untreated Rapid Cycling Bipolar can commonly cause adrenal exhaustion and often results in Chronic Fatigue Syndrome and the breakdown of gut-immune functions and theexaccerbation of inflammatory states- something very common in those on the autistic spectrum. Is treatable Rapid Cycling Childhood Bipolar under-diagnosed in those with other co-occuring (even compounding) conditions, or hidden by the domination of what is seen as ‘Autism’ or overlooked because of some other label.
It’s possible, just possible, that if an infant experiences Rapid Cycling
Bipolar several times a day at a severe degree that the ability to process
language or even objects for meaning, to use the brain in an integrated way,
to feel the body as one’s own, to feel safe with external stimulation of
emotions and sensory stimulation would likely all be delayed if not permanently limited.
It’s also possible that processing difficulties in someone with autism would increase the overstimulation caused by information overload in someone with this form of bipolar, triggering that seesaw. If Rapid Cycling Childhood Bipolar in early infancy can be picked up and the chemistry issues addressed early in those effected by it, it could potentially help a lot of children. How many other children with autism have their autism compounded by other undiagnosed and overlooked forms of Bipolar or Uni-polar conditions such as Depression?
In any case, being an autie with a pattern of Rapid Cycling Bipolar makes me a specific kind of autie. Some other auties will be ‘like me’, others will share some features but not others. Those who are effected primarily by depression will appear dramatically different to those mainly effected by manic episodes, by combinations of simultaneous manic and depressive episodes (this also happens).
Many auties don’t swing extremely in their functioning and self expectations. Others do. Could this be accounted for in some cases by the difference between those who primarily experience uni-polar depression hidden by their Autism versus those who have a far more swinging or purely driven and exhuberant emotional dynamic? Some are incredibly easily overstimulated. Others are understimulated. Could a closer look at the co-occurance of mood disorders within Autism help us to work more effectively with each group? As there is some medical view that epilepsy and Rapid Cycling Bipolar overlap (some are treated by a combination of medications including anticonvulsants), would this help us too in working with stabilising epilepsy in those easily overstimulated?
I am glad of the mania, it made me the dreamer and artist that I am. It
taught me optimism. I’m ok with the depression, it teaches me to own up and
respect love. I’m ok with the autism. Its helped me be a better and more diverse communicator. I’m ok with the tics and the OCD. They taught me the joy of freedom. All of them taught me not to hate my parents regardless of their own inability to manage their own related challenges and still to keep myself safe from dangerous and toxic behaviour. We need to understand our parents in order to understand and accept ourselves.
But I’m sure as hell happier with a smaller dose of the whole lot.
🙂 Donna *)