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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 *)
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