Katherine Kasper is a reader on the spectrum who read the third book in my autobiographical series, Like Colour To The Blind.  When she emailed me about the book I offered her the opportunity to send me 10 interview questions about it.  Here’s that interview.

KATHERINE

1)  What are the obstacles in the brain function that prevent awareness of the natural connections between body parts?  Poor nutrition, stress, lack of touching, preoccupation with outsideness, talking too much, lack of oxygen, fear of physical threat ….?

DONNA WILLIAMS

Wow, depends on the autism ‘fruit salad’ present.  For example, co-morbid depression can occur from 18 mths old and would dull such feedback.  So could an acute anxiety disorder like Exposure Anxiety which results in chronic involuntary avoidance, diversion and retaliation responses because one spends so much of early life in these involuntary self protection responses that other neurological connections are put on hold until that’s reduced or treated.  Then there’s things like Catatonia which occurs in severe mood disorders and can completely disconnect the person from the processing of body or emotion.  So can Anhedonia which is a complication of severe chronic depression.  And all can set in in children as young as 2-3 years old.

Then there’s the agnosias, like body agnosias which mean the processing of body messages, including emotional signals is not understood, sometimes not even perceived, so many people with this have extremely poor sense of temperature, hunger, posture, pain, and also the difference between physical and emotional sensation.  Auditory verbal agnosia will mean you may struggle to track the meaning of your own speech.  Visual agnosia may mean you struggle to process what you see or its wider context.  If you are meaning deaf and meaning blind, chances are you can’t internally mentalise visually so you will have to do so externally via objects for example, and it will also make you far more kinesthetic (physical) as a learner.

And then there’s severe dyspraxia, where the body feedback is very poor and hypotonia where processing of muscle tone is diminished.

And there’s gut, immune, metabolic disorders which can starve the brain of nutrients needed for info processing, lead to high brain toxicity levels, brain edema (swelling), brain ‘fog’, and a range of drug-like neurological effects which can impair info processing including that of body messages and emotions.  High oxidative stress will also result from untreated co-morbids, second hand stress, daily struggles with severe developmental challenges but especially in those with gut, immune, metabolic disorders and this will impair blood oxygen levels (as will functional B12 deficiency) and that means reduced info processing.

And if one’s autism challenges has meant one has been significantly disturbed in social-emotional relationships there’s things like attachment disorders or even just missing out on receptive processing of physical affection through aversion into late childhood, the brain will struggle to process stuff it’s not used to and hasn’t created the neurological pathways for.

So people can have any combination of  these sorts of pieces of ‘autism fruit salad’.

KATHERINE

2)How do you determine whether to go with a literal understanding, your own interpretation, or take a stab at what you think might be the other person’s interpretation is to determine “meaning”? I get in trouble for all three- I have seen a lot communication as a crap shoot, a random guessing game, and/or frequent “joke’s on you” traps.

DONNA WILLIAMS

aiaiai.  I’m still 30% meaning deaf and this escalates with fatigue, if the other person is a fast speaker, other noises etc.  But its still miles from being 90% meaning deaf at age 9.  So I’m not only purely literal, I can’t fully get the semantics with meaning in real time processing.  So I was soooooo scared trying to ‘pass for normal’ out there, I was mirroring everyone’s speech and saying a gazillion things I didn’t understand or mean, so, I quit that back in Nobody Nowhere.  I advocate or avoid now.  I’m happy to tell people I’m partially meaning deaf.  And if they make jokey rubbish at me, I tell them, you got the wrong person, my brains not equipped for this.  I will even tell people to leave if they think my processing disorder is funny or to be played with and I now often walk away if they’re too arrogant to be bothered learning to adapt.   I just say, sorry, gotta go.  I also will say to people, I have heard you, heard your facts, but I have no use for them, they’re just words.  If they get awkward about it, I will explain I only use practical language but its also the case I love surreal language, like Lewis Carrol.

KATHERINE

3) Some theology suggests that everything we see on this plane is a projection of our own thought, that thought never leaves the mind that thinks it, and that we are all victims on a sliding scale of our own human limited ability to deal with the physics of light energy….light bends and therefore we all get only a distortion at best…how does anything qualify as “real” or is “real” a temporary hypothesis, open to minute by minute editing? How do you define “real”?

DONNA WILLIAMS

Ah, great question.  It’s all a matter of perception.  And that’s why those who live by appearances think THAT’S all REAL but those living by beingness think, what, are you folks lost, deluded, of course the appear is not the be, but its a kind of perceptual deficit some people have.  Ego driven people are really prone to seeing what they want to see, what’s in it for them.  So if a scared attractive woman giggles and grins, they prefer to look no further and take this as a come on.  Why?  Because they are ego-driven, its about them, what they need or want and they’re not deep thinkers, they swim in the shallows, they don’t care what’s beyond and they don’t sense people.  And are there people on the spectrum like this?  You betcha!  Many Aspie people live in that way.  Some are beingness people who sense but others are ‘what’s here for me’ and really don’t like the deep, don’t look for beingness, just spend their lives seeing what they want to see.  It really comes down more to personality traits.  If you have those which are all about ‘me’, then you won’t look beyond.  Other traits may make someone sense patterns acutely, have an ingrained humanity toward others, struggle to put self first, be naturally open to the sensations of others.

KATHERINE

4) When you and Ian “checked” to find out the “real wants” of your wedding preparations, how do the social constructs of ring, dress, and cake not fall into stored social expectations? In other cultures, these items would not have the “want” built in to them-they are culturally conditioned concepts.

DONNA WILLIAMS

Great point, I agree!

we were choosing WITHIN the presumptions we would want these.  So I may not want to take home a dog turd either but present me with 10 of them and get me to use checking to ascertain which I experience as the least disgusting and I’m sure I’d find which one that is.  And it is true that wedding trimmings can be sensorily buzzy so there is that (and more buzzy than dog turds unless you’re a dog!).

KATHERINE

5)The role playing of the board game Dungeons and Dragons reminds me of the role playing of the separate entities in Ian and Donna in Like Colour To The Blind. However,the roles created in these games are held in high esteem by the players and mourned when lost by “battles”; these role-playing protective shields if carried into our daily lives are seen as maladaptive, multiple personalities. Society allows, indeed encourages, multiple personalities in some realms (Second City- on-line virtual reality).
Do you see the increase of role-based escapism games an expression of exposure anxiety like multiple personalities? What does this mean for the the developmental state of our society?

DONNA WILLIAMS

Wow, coolest question award goes to you!  Ah, yes, you are so right.  I do think non-spectrum people play roles in daily life and hence when spectrum people learn to mirror these, develop them as repertoires for survival, these are presumed desired, valued, an extension of the self.  And around 30% of kids with autism are echolalic and many are able to mirror actions when alongside the other person, often particularly those with significant learning challenges who otherwise struggle to think or entertain themselves.  And then there’s some with autism, but particularly Asperger’s who have lived their lives in their obsessive interests and never develop preconscious or involuntary mirroring.  But those with EXPOSURE ANXIETY can feel they developed mirroring of roles/personas for survival, necessity, so they’re not integrated with selfhood.  So the RELATIONSHIP to the roles differs.

Is the immersion of non spectrum people in role-based escapism making them identity confused as in Dissociative Identity Disorder?  Hmm, well for some personality traits, like the Mercurial trait, that may be so, but for others this escapism only more clearly differentiates and defines the everyday self.  So I think we can’t really generalise though of course its tempting to do so.

KATHERINE
6) The title “Like Colour to the Blind” suggests that knowing how to identify and express authentic personal experiences could be considered as irrelevant to a person who believes they are entirely separate from everyone else as a blind person might be to the explanation of color.
What good would it do for them to learn that it exists if they were forever denied the direct knowing of it or the understanding of what to do with it if they had it, another tantalizing carrot beyond reach?
How do you encourage someone that it will be worth the excruciating effort to pull out of the inertia of isolation?

DONNA WILLIAMS

Good question.  This is where coercion or compliance based programs like ABA won’t get more personalities to that point.  It can teach them to play Pavlov’s dog, to do whatever their superiors prompt, but it can’t teach them to want.  That’s what an indirectly confrontational approach is for.  But if you are so mono-tracked in your process that you can’t hold a simultaneous sense of self and other (that’s in the next book, Everyday Heaven) then you can’t get the concept, the perception which is the foundation of why you would care about self in relation to other.  So if you lack a capacity to process simultaneous sense of self and other AND you have Exposure Anxiety creating constant natural aversions to it, you can’t get around that until both are addressed.

KATHERINE
7) Did you read anything about Helen Keller’s life (or any other famous challenged individuals) during your growth challenges that you identified with and took as helpful stepping stones to discovery for your own “blindnesses”? We are taught about the “blind spot” in our sight in driving classes and how to compensate with rear-view mirrors. Is it possible to develop “rear-view mirrors” for the other forms of “blindness”?

DONNA WILLIAMS

I think I saw the film back in my more autistic days when I couldn’t process visuals or verbal language in real time processing.  The magic of that is I mapped the whole film without meaning so I ended up with all the movement and emotions in it but none of the conscious meaning, so that’s actually really powerful on a spiritual level, its like feeling a movie as music.  I do remember noticing ‘that girl’ was like me… because I was considered ‘feral’, people couldn’t hold me, I seemed deaf, I stared through people and objects, so I do remember my fascination with the patterns of the girl in the film (I at least did know it was a girl and I did know the other person was a helper).  Guess hard to explain unless you have these issues or synesthesia.  Anyway, next time I knew of Helen Keller was as an adult when I was taken to a deaf blind school that took autistic children with meaning deafness and meaning blindness.  That was awesome for me.  As someone with visual and verbal agnosias I could SO relate.  But it was actually the regular experimentation of my parents that taught me about compensations.  See in the 60s and 70s they didn’t have the autism info they have today.  I was assessed as psychotic at age 2 then later disturbed and tested for deafness up to age 9 so my parents were lost, had no guidance at all and just had to experiment, work out what made me buzz, what inhibited me, what drove me to rebel, what attracted me.  They were amazingly innovative as well as crazy.

KATHERINE
8)Temple Grandin speaks of her increased ability to feel emotions after she created her squeeze machine and she was able to internalize “being held” on a regular, controlled basis. In Like Colour, did the emotional connection between you and your own life grow in measure to the increase of “squeeze time” with Ian? I have read about the release of oxytocin in the brain in response to human touch and the degradation of life force without it -(foundling babies died when not held in children’s’ homes).

DONNA WILLIAMS

Hmm, no.  But I was able to advocate about touch so I felt I was on the road to empowerment.  But I was still at the experimenting stage there.  It wasn’t until Everyday Heaven that touch, emotion, sensuality and sexuality all connected.  I did have a lot of touch growing up but not human.  I’d fall into thick foliage and let trees catch me.  I’d spin myself into rugs and curtains.  Like a cat, I’d get into any box or small space, loved enclosure.  I’d rub my face and body and arms on all textured surfaces.  But it wasn’t until I was with Sion in Nobody Nowhere and later Mick in Everyday Heaven and then Chris in Everyday Heaven that I really got into touch as bonding…to listen to someone’s heartbeat, feel their breathing, settle into their embrace and get wrapped up in their smell.  THAT was really a huge deal.  But Ian was very schizoid so he was someone I had a journey with but it wasn’t the same as those other three people with whom I had far stronger bonding.  What Ian and I had was a good system of DARING and we were strong comrades, but it’s not the same.

KATHERINE
9)In Like Colour, you finally agree to visit your remembered brother. Surprise!he had morphed. In light of your forfeit in rebuilding the relationship with your mother, do you ever anticipate healing enough to attempt this mountain climbing expedition? Is it possible for an internal healing that permits us to continue developing even if we don’t agree to externalize it? Does choosing not to start rebuilding some relationship with her mean you opt for that part of yourself to stay “broken” as well and will without question prevent other parts from working wholly?

DONNA WILLIAMS

Not at all.  I was the 2nd of 3 children and 16 mths after my older brother.  My mother still didn’t know how people got pregnant until after me, her 2nd child.  My aunt told me my mother had twice taken Quinine when pregnant with me, which was how people tried to cause spontaneous abortion in the 60s before legal abortion.  It didn’t work.  She’d been drinking since 14, I was born when she was 20.  On top of this its likely she had post natal depression, but in any case the welfare centre had me from 6 mths to 2 and a half years old.  At that age I was self injurious, appeared deaf, had no response to pain and was assessed in a 3 day hospital assessment as psychotic.

According to my older brother, he remembers witnessing violence toward me since I was months old.  Both of my parents have spectrum related challenges of different kinds.  There is no foundation there to bond with.  I have never felt an interest in or attraction toward my mother as a human being.  My only fascination was to understand her actions.  I was bonded with my grandmother who I had slept with for a time in infancy and also bonded with the Sister at the Welfare Centre, Sister Jelly.  It was partly this bonding with these others that meant my mother by contrast felt to me unrelated but I also didn’t like my mother’s movement patterns or smell and it’s possible that’s got some mutality to it.  So I think its a myth that we all have to go back and get bonded.  What if your mother is already highly disconnected from herself?  What if your mother was Myra Hindley?  Would you need to go bond in order to be a whole person?  I don’t think so.  What’s essential though is that you did bond with SOMEONE in infancy and hopefully those relationships continued.

KATHERINE
10)If we “check and recheck with variations” and get that we  authentically don’t want a relationship with THAT person, how do we know it’s not our defenses being very tricky with our wants? And how do we ever explain this “anti-social non-connection” to others who don’t begin to know us or care to invest in the knowing, but hold it against us?

DONNA WILLIAMS

If I find a non-response to a “Donna doesn’t want” check, then I may do a “Donna can’t say” check and then an “if Donna could say….” check.   It is hard for others to accept we won’t want what they want us to want.  But in my world, if thy wish to hold that against me, that’s ‘their stuff’ not mine.

Thanks for the interesting questions.

Warmly,

Donna Williams

author, autism consultant, public speaker

http://www.donnawilliams.net

http://www.myspace.com/donnaandtheaspinauts