Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Autism Blog: Donna’s World

October18

Dormant by Donna Williams  Pam Lane is from the Dallas chapter of Autism Society of America for whom I’m presenting this November 2008.  I gave her the opportunity to ask me some questions before speaking in Dallas.  Here’s our interview:

PAM LANE:

Donna, I know everyone is looking forward to hearing you speak about autism here in Dallas this November.

In your book, Nobody, Nowhere, Bernard Rimland compares his son to you because as parents we all wonder why our children seem content with their lives.  I know with my son there seems to be so little motivation to improve his life.  Can you explain a little of that driving force that made you want so much to find yourself.

DONNA WILLIAMS:

I think that until late childhood I was largely off in a sort of sleep walking state.  I think this may have been a very right-brain state where I hadn’t yet got a lot of integration between both sides of the brain.  Essentially I wasn’t firing on all cylinders.  I just didn’t reflect, I didn’t connect things, and my receptive language was only about 10% until about age 9-11 so I didn’t have the reasoning tools to do much more than copy and ‘be’ and live moment to moment.  In late childhood I was put on zinc, vitamin C, multivitamin-minerals, began to eat whole meals for the first time and the use of gestural signing and the use of representational objects at this time all helped switch my brain on.  I was also put on anti-inflammatories and sedation so not sure if stuff like this reorganised me.  But I do remember becoming a ‘thinker’.  I was scared of thought, didn’t feel in control of it, didn’t feel good at it, didn’t identify with it, so that’s a whole other battle.  At the same time it was new, I was curious.  So we often forget the relationships between identity and developmental surges and how we do or don’t emotionally manage this big shifts.  Do we go with them or turn from them. I think it’s often the toss of a coin.

But I think I then stayed on a track of trying to comprehend, to keep up and it was often approach-avoidance, some days and weeks I’d just give up on this new system, see it as non-me.  But ultimately it has become part of my life.  I think Temple Grandin had this awakening around age 3 when she began to articulate sentences clearly enough for people to understand.  But seems she feels she was always a thinker, where I felt I was a sleepwalker until late childhood.  And I still struggle to stay ‘online’, it’s like my ‘batteries’ go flat.  Where she can stay content in the world of thinking almost endlessly.  She says she thinks visually (60-65% of the general population do) and this ability to internally mentalise was always with her, even in infancy, but for me, I still struggle to internally mentalise and because of visual agnosias (meaning blindness) I think physically, not visually and I use tools to EXTERNALLY mentalise.  I think this takes more effort so I burn out or go ‘offline’ easier.

But the drive to understand others, that was really a spiritual awakening, part of a sense of shared humanity, the evolution of a natural anthropologist in me perhaps, a good spy 😉  And it was really after my 30s when I’d got capacity to simultaneously process sense of self and other (which I wrote of in Everyday Heaven ) that I came to think so much about people in relation to people…it became my new Rubik’s cube.  So I guess the keys partly, were things like speeding up information processing, and for me that means treatment for gut, immune, metabolic, nutritional challenges, removing the processing and health drain of untreated severe mood, anxiety and compulsive disorder, developing adaptations for external mentalising, for meaning deafness, meaning blindness and getting by with a unintegrated brain which tumbled everything.  But spiritual development, learning to like myself and the human world, accepting identification with body, mind, emotion, personality, those were all really essential to ‘drive’.

PAM LANE:

I imagine your life has been quite a journey.  Are there any particular incidents that you found life-changing?

DONNA WILLIAMS:

On so many levels.  The loss of my grandparents who had been my main carers until age 4.  That caused deep scars but ultimately great spirituality and connection to them.  Being sent to the countryside when in breakdown/regression states.  Relationship to the mirror, to movement, a big garden, a typewriter, records, colored lightbulbs, having a brother 7 years younger so I got a second shot at learning to play and be a social equal and discover a responsible self within me.  A wonderful diversity friendly teacher in grade 6 who turned around some of the emotional damage of earlier education.  A crazy father who used surrealism, rough and tumble, gestural signing and an indirectly confrontational approach.  Early introduction to dance which gave me skill through rote, musical learning and physical patterning.  The sink or swim necessitated by my mother’s own challenges.  A shrink at the right time who believed in my intelligence and got me back to education.  Tinted lenses.  Treatment for gut, immune, metabolic disorders.  Treatment for mood, anxiety, compulsive disorders.  My husband who helped me befriend love.
PAM LANE:

You are quite the achiever.  Nine books, art, and now I find out you sing.  Was it a surprise to you when you recognized how talented you were?  Can you tell us a little about how you discovered these interests?

DONNA WILLIAMS:

Hmm.  I had a great love of textures, patterns, colors, music, movement, but had no idea I was an artist.  I sang since I was 3 and by age 9 had a huge repertoire of jingles and songs which formed most of my verbal expression other than Donna-speak (idiosyncratic speech).  Around age 10 I was left a record player and old 78s.  So in the next 1-2 years I could sing all these 1920s, 30s, 40s songs, all in the voices from the records.  But I thought of myself as a parrot and was called that sometimes – Polly Parrot (because I echoed), Polly Possum (because I was aloof).  I began typing letter strings at age 9 and by age 11 was typing word lists and by age 13 had poetry.  So it was actually a long haul and nobody looking at my letter strings would have imagined a prolific and expressive writer.  I only did one rote learned drawing from age 3-9, same one over and over, a dancer…then suddenly I began drawing cows, for 4 years, then drawing my father’s tatoos.  It took until adulthood to become an artist, writer, singer-songwriter, so, no, I didn’t think of myself as talented.  I could dance as I was trained heavily rote style in ballet from 5-8 years old and there were harsh sanctions for imperfection.  So I guess I appeared good at something, if only being an obedient soldier.  I also started speaking Italian around the same years I began to develop functional speech (age 9-11) and today speak 4 languages, so maybe that’s a talent.  I was very afraid of discovering I had abilities.  I didn’t want any skills which would draw attention to me.  I have battled long with Exposure Anxiety but feel I’ve overcome it now.  I’m now a public speaker and the singer in a band, Donna & The Aspinauts.

PAM LANE:

At what age did you realize you had autism/Asperger’s?  How did that knowledge make you view yourself?

DONNA WILLIAMS:

My first awareness of my condition was my identification with being deaf.  I was so often thought deaf, even refered to as deaf, (‘don’t worry, she’s deaf’, ‘what are you, deaf or something’).  I remember being really distressed by my meaning deafness around age 9-11.  I tried very very hard to learn to develop functional speech even though I couldn’t hear with meaning (verbal agnosia).  Then I think around late childhood I became aware people thought of me as broken (disturbed) or crazy (psychotic) so much of my struggle was in swinging between giving up on an insensitive and ignorant world and continuing to strive for an equal place among others.  I first heard the word autistic when I was 10 after a teacher had taken me home after a bad domestic violence thing between my parents one night.  She was very kind to me but found I couldn’t understand her, couldn’t answer her and didn’t recognise things (visual agnosia).  Because autism was a very taboo word in 1973, it essentially was a really bad thing to say to a mother as it was tantamount to saying ‘you have damaged this child’, I think my mother was far more content with the idea of me being disturbed/psychotic than autistic.  But around late childhood, they came to understand my meaning deafness and adjusted to it with gesture, representational objects, slowed and simplified speech and it did wonders for me.  So that also taught me that I wasn’t ‘totally broken’ and that other people could adapt to me if they understood how.  I was formally diagnosed with autism in my 20s.  I came to understand I had an information processing problem (because severe agnosias are more than ‘differences’).  So I guess I identify more with people who have agnosias, sensory perceptual differences, brain injury and on the co-morbid side and re gut, immune, metabolic disorders, I identify with those who manage mental-health issues and health challenges.

PAM LANE:

Was there one person in your life that impacted the direction you took?

DONNA WILLIAMS:

One?  No, I couldn’t say that.  There were several.  My paternal grandparents were my first experience that being loved could be safely indirectly confrontational.  But then losing then at 4 and a half also simultaneously caused a PTSD fear of loss but also created the first foundations of a deep spirituality in me.  My father, because he taught me that no matter how dark it gets, laughter and silliness are great medicine and that no matter how dark and lost I got, I was always still a human being, just a kid, not some walking pathology.  My mother, because a ‘bad cop’ is an incredibly motivating force to swing against and because she did sink or swim, ‘tough love’ like a bed of nails and a hair shirt, and introduced me to an inescapable militarism which has made me ultimately very good as self disipline – I can be both soldier and sargent but took time to get it to a healthy and balanced state.  My younger brother, because having a playmate 7 years younger meant that when failure lost me whatever small interest I had in involvement with other children by late childhood, I got a second chance to learn how to play, to care, to feel equal with and important to another child.   My 6th grade teacher because he restored faith in classrooms, in inclusion, in learning and the idea I deserved and could have equality among others.  My shrink in my teens who taught me I was worth caring about and who got me back into education so however disabled I was in other ways, I at least had a knowledge base.   Lawrie Bartak for spending time helping me work through sensory perceptual labyrinths, my hypnotherapist who undid a mountain of PTSD and fragmentation, Chris for finally giving me faith in love and loving and through whom I became familiar with warmth, stability and sense of home which are so very healing.

PAM LANE:

Tell us a little about the topic of your talk, “Autism is a Fruit Salad.”

DONNA WILLIAMS:

Ah, the Autism Fruit Salad model is best captured in books like Autism; An Inside Out Approach but then really taken far further in the book, The Jumbled Jigsaw.

Essentially, autism is considered ‘one thing’, one condition.  But after being a consultant to 100s of children and adults on the autism spectrum I came to understand that autism is more like a ‘fruit salad’.

This meant that in any one person on the spectrum, information processing differences which appear ‘same’ actually can have completely different underlying issues and respond best to completely different approaches and adaptations.  I came to understand how ‘autistic’ looking personality traits when blown out into ‘personality disorder proportions’ are mistaken for ‘the autism’ itself and how this is often so emotionally harmful and counterproductive to doing healthy personality work.  I came to understand how unmanaged co-morbids over fill ‘the bucket’ so there’s far less room to filter or work through whatever other incoming information bombards the person.  I came to understand how things like learned helplessness, pathologising people and social phobia in response to relentless pursuit and social invasion can dramatically increase the extremity of how someone’s autism presents and can also be dramatically reduced when healthier more fitting approaches are brought in instead.  I learned how personality traits, sensory perceptual and cognitive challenges and learning  styles can inform how we should adapt things for each individual, which strategies will best help each.

This holistic style of thinking about and working with autism was like swapping very crude one size-fits-all hit-and-miss tools for a really refined tool set with which you could empower someone with autism best help themselves.  What’s more, it also often means that once we realise how crude and ill fitting the one-size-fits-all approaches often actually are, families, classrooms, employers can implement adaptations and strategies which are mostly all low cost or cost free.

PAM LANE:

I know you are going to give us a lot of good information from looking at your powerpoint presentation, but can you tell us your most difficult characteristic  you struggled to overcome?

DONNA WILLIAMS:

Can’t really pick the most difficult as each was a big challenge, not necessarily to overcome (because I’ve decreased most of them, not overcome them) but to learn to healthily MANAGE.  And some of that was about the work I did, but some of that was about developing more autism friendly strategies, supports and environments around me.   Nevertheless, here’s the list.

  • Developmental delay (walked at 2, toiletted at 3, echolalia from 18 mths with functional speech by late childhood)
  • Self injurious behaviours since age 2 into my 30s
  • Meaning deafness (verbal agnosia), meaning blindness (visual agnosias), face blindness, body disconnectedness (body agnosias),
  • Persistent fragmentation & fluctuation in processing heard, seen or physical information,
  • a sequencing deficit,
  • Great difficulty to internally use visual or verbal learning styles with associated strengths in kinesthetic (physical) learning, musical (rote) learning, feeling systems (logical/mathematical thinking),
  • Hypotonia,
  • Dyspraxia (meaning I’m high mono-tracked, incoming info gets tumbled, tracking both sides of my body was hard, constant gaps in processing incoming information and inability to filter incoming information with associated overload)
  • Largely inherited co-morbid issues starting from age 2 which have fitted Exposure Anxiety, Social Phobia, OCD, Tourette’s tics, Rapid Cycling Bipolar, addictions to chemistry highs of my own emotional extremes, but also secondary but significant Reactive Attachment Disorder and PTSD which were part of the incomprehension of my environment and having two parents with their own pretty extreme ‘fruit salad’ and the impact that had on the family,
  • Gut, immune, metabolic disorders,
  • An ‘autistic looking’ collection of personality traits functioning at such extremes as to regularly present as ‘personality disorders’ and be confused with ‘the autism’.
  • Living with family breakdown and transitioning to a healthy adult life.

PAM LANE:

As a parent, I always worry about the inability to form relationships.  One of the questions I frequently hear is, “Do you think my son/daughter will ever marry?”  Tell us a little about your husband and how you were able to develop and trust another individual enough to marry.

DONNA WILLIAMS:

Ah, well the full story is in Everyday Heaven.  But in a nutshell, I married him in my mid 30s and that was after so many strategies, adapatations, self advocacy, that much of my autism related issues were out least at a level where this healthy relationship was possible.  He likely fits ADHD, Asperger’s, Hyperlexia but has no diagnoses.  Mostly he’s a Gadoodleborger (see Somebody Somewhere), a bridgekeeper, a translator, a natural anthropoligist who can move between autie and Aspie worlds.  He works in supercomputing, has a great love of nature, an appreciation for arts, history, learning.  He’s a very quiet, warm, grounding personality who is socially non-invasive and we’re both very solitary characters so we often are together in silence doing our own thing.  He’s very autism friendly.

His biggest challenges in living with me were learning to work with Exposure Anxiety and other co-morbids like Rapid Cycling Bipolar and the constant fears associated with Obsessive Compulsive Disorder (this is completely different frombut often confused with an Obsessive Compulsive Personality).  He also had to literally learn my language as around 30% of my communication was in sounds, gesture, idiosyncratic Donna-speak or delayed echolalia.  And he had to adapt hugely to my meaning deafness as he loves to read and wants to always share new information and I can’t visualise things I hear or read and I lose, at best, 30% of the meaning associated with the words and often 50% or more.  At the same time these issues really helped him develop new skills and I think sometimes it was really like going to another planet for him.

PAM LANE:

Do you suspect the current increase of autism spectrum disorders to be due to any particular element?  What role, if any, do you think the vaccines may have played in the cause of autism?

DONNA WILLIAMS:

Hmm.  Well I was born in 1963, before the MMR was used.  By six months I had jaundice and began years of chronic infections.

I had two primary immune deficiencies – a lack of white cells and a lack of the ‘flag’ which alerts the immune system as to which pathogens are in the body or what food was eaten.  As a result, I had no defence against infections BUT I also lacked the immune system functions which would have responded usefully to vaccinations.  I wasn’t vaccinated with MMR, but I got the measles and mumps around age 2-3 and in my 30s when I finally got a functioning immune system (thanks to immunology specialists) I had flare ups every six weeks of the measles for 10 months  as my body finally started fighting a severely damaging virus it had apparently carried for 30 years.  So, given the level of gut, sensory perceptual, cognitive and co-morbid issues I was struggling with, I don’t think carrying the measles for 30 years helped my brain or body at all and I understand I would have infected many people in that 30 years as a carrier.   So an unvaccinated world wouldn’t have helped me but nor could I have benefitted from vaccination even though other people without my immune faults could have and would have protected themselves from viruses from people like me.

I think we need to screen for those like me, divert us into immune boosting programs (I spent 26 years on antibiotics before getting REAL help for immune deficiency) and sensibly vaccinate those who have functioning immune systems in a manner which will not result in immune system collapse.

Do I think vaccination caused my ‘autism’?

My autistic personality is from my parents, I have their co-morbids, I have my father’s cognitive and associated learning challenges, I have the language and visual processing issues common to my father’s side (there are others diagnosed on the autism spectrum on that side), I have the gut and allergy issues from my parents (gut issues, asthma, eczema, hives, migraine, arthritis, gluten intolerance, salicylate intolerance, milk allergy, occur in others in the family).  So, no, I don’t think the viruses I had caused my issues.

But I do feel the impact they had on gut and immune function contributed to an inflammatory state in which brain nutrition was reduced and brain chemistry became further imbalances.   I also don’t think vaccination regimes would have helped me.  Saying that, since having overcome my immune deficiencies in my 30s, it was four years ago that a flu virus damaged my vision in one eye for 3 mths due to brain swelling.  After I got my sight back I got flu jabs annually and whilst they do activate my immune system which feels icky for a few days, I have never since suffered a severe flu.  So I weighed up the potential immune distress of a single dose vaccination in a person with a now healthy immune system and weight that up against serious neurological risk of flu-related brain swelling in someone with a naturally high inflammatory state.

Do I feel SOME children have undetected immune system faults which collapse under a bombardment of vaccination regimes?  Yes.  Do I feel we should be screening to detect these children before vaccination regimes?  Yes.  Do I feel vaccination regimes are too intensive due to penny-pinching and fear parents won’t return for boosters?  Yes.  Do I feel that parents should have a right to space out vaccinations provided they contractually agree to complete the program provided no serious warning signs arise?  Yes.  Do I feel relentless vaccine regimes given to the wrong child, have sometimes caused such severe immune and gut function collapse as to effect brain nutrition and a systemic inflammatory state leading to a plethora of co-morbids which can severely effect functioning?  Yes.  Could this ever display ‘autistically’?  Well, that part really depends on what you call autism and every political group grapples to name autism after its own exclusive group.  I don’t mind the idea some professionals used to use.  If it looks like autism, and functions like autism, then it IS autism.  Does that mean all autistic people are vaccine damaged?  No way.

PAM LANE:

Is it difficult for you, knowing how you feel, to read articles that attempt to identify the personality of persons with autism?  When we watched “Rainman” with my son, he appeared to be troubled by some of what he saw.  He never wanted anyone to know he had autism.  Did you feel that way and, if so, how did you come to accept it enough that you were able to write books and talk openly to people about it?

DONNA WILLIAMS:

Well, remember that when the first of my nine books, Nobody Nowhere, was published in 1990, it was the second published book by a person with autism in the English language and it was the first one on mainstream bookshelves (Temple’s book was out a decade before but then only in the educational sector).

So, there was none of the ‘autistic pride movement’ then, in fact Asperger’s wasn’t a diagnosis in the English speaking world until the mid 90s so all the Aspie’s hadn’t yet gathered.  Those of us diagnosed with autism still believed we were 1 in 10,000 people.

So all the stereotypes were created by NON-SPECTRUM PEOPLE.  And, yes, Rain Man is a good example of that.  But by the internet era of 2000 onwards, the ‘autism as culture’ movement was really growing.  Those with Asperger’s were starting to introduce themselves as ‘autistics’ and claim a sort of ‘single culture’ or define an Obsessive Compulsive Personality as ‘autistic’, define Visual Thinking as ‘autistic’ (in fact 60-65% of the non-spectrum world think visually), define being techie as ‘autistic’, and ultimately claim pretty much every creative and innovative eccentric in history as ‘autistic’.  I was watching the rise of a supremist stance in which people actually wrote Nazi like rubbish like ‘a good NT is a dead NT’ (NT meaning ‘neuro-typical’ and used to refer to non-spectrum people).  I was watching a growing militant separatism in which adults on the spectrum were assertaining that non-spectrum people were so abhorrent, arrogant, selfish, that their world and it’s structures and mores were a stain on mankind.  That stuff really threw me.  I just don’t buy supremist or separatist crud.  Nazi’s did it.  I won’t.

I also really felt the curists were failing the humanitarian test by pathologising people and seeing them as lab rats, walking bunches of pathology, and presuming that once they ‘got rid of the autism’ that there’d be a non-spectrum child there and that really irks me at a gut level.  I’m a person in my own right, a personality, a whole human being, who happens to live with and manage a range of challenging issues on a whole load of levels.  Do I prefer to have a lesser degree of those issues?  Yep, you betcha.  Did I need a personality transplant?  No way.  Am I still autistic?  Sure.  Would I prefer to be a non-autistic person?  I don’t think so.  I’ve been autistic all my life, I’ve got a lot of valuable strengths both from the disabilities and in the journey adapting to them.

I certainly don’t feel anyone else speaks for me.  I don’t feel any one group has a right to co-opt autism for itself.  I feel that to do so robs us of our personhood and our true diversity within an equally diverse non-spectrum human population.

PAM LANE:

You do so much good for others that are struggling with living with an autism spectrum disorder and your willingness to do so doesn’t fit the textbook definition of the unfeeling, emotionally withdrawn child.  I know my son has developed much more empathy with people he knows, but that he still has trouble showing an emotion.  He may sigh or say, “That’s sad,”  but there is little in the way of expression except that sometimes he looks as if he is in pain—not necessarily for someone else but for himself.   As a parent, we want more than anything for our children to be happy.  I wonder if I watched him all day, now that he’s older, if I would see as much happy in him as I do this pain.  It’s not really sadness; it’s pain.  Do you have any way to help parents understand their child’s emotions?

DONNA WILLIAMS:

All people with autism are different.  Many things get people down and can even feed depression.  I often feel isolated becaue of my receptive language processing issues or because when I see things I am still mostly context blind, often still object blind, really struggle to see things language wise, so it’s all impressions to me, it’s not the world of meaning Chris or others often see, and I have deeply valued this ARTism but also felt isolated by it.  Many of the issues I’ve now got to manageable levels were pretty disabling, socially isolating or functionally deeply frustrating.  I still get a fair degree of ignorant responses to my stuff by non-spectrum people who still presume some ‘one normality’ and that’s a burden.    So, yeah, there is often pain, sometimes because of the mismatch with the non-spectrum environments, personalities, systems, but sometimes just the nature of some autism related challenges themselves.  So it’s a bit simplistic to presume that just because someone else finds their autism all rosy that it is so for all people on the spectrum.

And we all have different mood stuff.  Some of us tend toward depression and that is often a place of pain and despair for any of us.  Creating a more autism-friendly life sure helps.   In my case Rapid Cycling Bipolar stuff has given me extremes of euphoria, bright sparkliness as well as dark deep potholes to fall down, so my pain mood wise was far more fluctuating than those who deal with depression alone.

And we all have different personality traits and we have to build lives that fit those or we are going to be sad and in pain.  I have mostly ‘autistic personality traits’ – solitary, idiosyncratic, vigilant, artistic – traits which compell me to be alone, avoid intimacy or be in my own world or relate primarly to objects.   But I also have the self-sacrificing trait, which is why I have a natural drive toward empathy.  Its not an ‘autistic personality trait’ because we commonly associate it with non-spectrum people, but those on the spectrum can have ‘autistic personalities’ or have a few traits which stand out as distinctly ‘non-autistic’ or even have so many stereotypically ‘non-autistic’ personality traits it is hard to imagine they are ‘really’ autistic.  That’s where we are the fools of tomorrow.  We still can’t distinguish personality from the autism and some try hard to entangle the two.

Someone with an ‘autistic personality’ has experienced who has experienced such pressure to instead have a ‘non-autistic’ version, can have really poor self esteem and wrongly believe that if they had a personality transplant they’d be a ‘real person’, have a ‘real life’, be ‘ok’, and that is a fast track to deep spiritual pain one would be best not taking.

PAM LANE:

I am so excited about the opportunity of hearing “Autism is a Fruit Salad.”  Thank you so much for sharing these answers with us.  I hope I selected questions that others have also.  You are an amazing woman, and I believe this is a great opportunity for the people of Texas to learn more ways in which they can help the children and adults that live with autism.

Thank you so much for participating in this interview.

DONNA WILLIAMS:

Thanks for the interview.

Donna Williams, Dip Ed, BA Hons

author, artist, singer-songwriter, screenwriter

http://www.donnawilliams.net

 

Dallas, TX, USA – Tuesday 18th November 2008

Topic: Autism is a Fruit Salad

Time: 7-9 p.m.

Venue: Northaven United Methodist Church Sanctuary, 11211 Preston Road, Dallas, TX  75230

Cost: Free

Contact: Pam Lane (ASA)

Email mailto:pamalane@msn.com

NB: Babysitting will be provided as well as snacks.