Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Delving into the Everyday Heaven of Donna Williams


Slinky by Donna Williams A reader from Aspergers Parallel Planet, Alyson Bradley, sent me interview questions about the fourth book in my autobiographical series, Everyday Heaven (published by Jessica Kingsley Publishers).  A brave woman indeed for she is diagnosed with Asperger’s, is Dyslexic with learning difficulties and cognitive challenges and not a big reader.  Her questions are interesting.  Here’s our interview.

First what inspired you to write the book, Nobody Nowhere, this part of your life journey, can you remember the moment you decided to write, or did the book just evolve?

Ooo, goodness.  Well I wrote the first one, Nobody Nowhere,  as a confessional before killing myself, a last ditch hope that if there was hope for an equal life as myself then I might hold on.  Turned out there was that hope but I found it in helping others.

Then, Somebody Somewhere was written because I was changing so quickly, I wanted to log the processes as I emerged from the emotional and linguistic aspects of autism.  I didn’t want to find that important developmental shift had never been recorded.

Then Like Colour To The Blind I wrote because it was important to help others navigate things like Alexithymia and Schizoid Personal Disorder in the search for a real and connected emotional self and it was also the birth of connection to body in a lot of ways, real breakthroughs with body agnosia issues, and of course Alex’s journey with augmented communication and its role in his emergence from autistic withdrawal.

But Everyday Heaven was a tribute to my father, to ‘Margo’ and to Monty, those who died and the spirituality of those losses and how those connections really helped me to stop fearing love and pull out all the stops to openly embrace it.

You mention in the book – Accidental “autistic marriage” this intrigues me as have also entered into relationships which were more of a partnership/understanding  and guess I want to ask did you feel it worked at the time, feel used or just knew a marriage of convenience?

Hmm.  In the early books I wrote of a ten year history of what I called ‘Domestic Prostitution’ which think was really about a combination of lack of choices (homelessness, poverty, lack of daily functioning and adequate self help skills, the need for someone to mirror in order to function) but also low self esteem/masochism and indoctrination into this as an alternative lifestyle to institutionalisation, all of which is a really appalling limitation of choice.

But in Everyday Heaven I wrote that my ‘autistic marriage’ to Ian in Like Colour To The Blind had been an ‘accidental marriage’.  This is because he and I did that strategy called ‘checking’ (explained in Like Colour To The Blind).  This meant we used statements used to trigger emotional response because questions would only result in stored lists of rote learned theoretical wants ‘a person might have’, not what we really wanted.

Because, as part of our respective autism, Ian was dealing with Schizoid Personality Disorder and I was dealing with Exposure Anxiety and was then functioning like someone with Alexithymia (an inability to link thought and emotion, differentiate or explain feelings), trying to cognitively find out what we wanted or liked had become severed from felt emotion.  So this triggering, this ‘checking’ technique was all we had.  And when he said ‘Donna wants to be marriage’ my whole face lit up and my emotional connection to that as a want was undeniable.  But even then I knew that whilst the statement was true, it wasn’t true about him and I.  It was ‘the Welshman’ (from Nobody Nowhere) who I was still in love with and imagined as the only person I’d have married, so then I was stuck.  And I just couldn’t dare telling Ian this, nor openly stating it to myself, so I went through with marrying Ian because we had a pact to do all we found were true wants.

So, wow, how naïve, I had no idea the real implications of that.  One very costly adventure.  But how I felt about the marriage was it was a functional way to live.  I had someone to now mirror so I could get dressed, washed, brush my teeth, help with cooking, eat.  When you’ve got significant functioning issues this stuff really becomes a far bigger priority than whether or not you love.  But the important thing was that I really got to move on, to fall in love with Mick and get over the Welshman, to have great sex with Shelly and know what that was to experience and to meet the man I’d ask to marry, Chris with whom I feel I’ve got the ‘package deal’.

You say “your explanation of sexuality and orientation seem confused for a while”, is this because of not knowing self or not understanding the mechanics of relationships, do you feel asd individuals attractions wise view others differently from the average “norm”?

Hmm.  I’m bisexual but I’m also a serial monogamist!  So I’d only be with either a man or a woman but I’m not with both even though I’ve lived in both straight and gay relationships.  But then I’m also quite different with each.  In my relationship with Shelly, I definitely felt more androgynous if not boyish and with Chris I swing from androgynous to femme.  I’m definitely still rather divided in the identity department.  Part of me definitely feels like a gay male in a woman’s body, part of me would probably like to be a bricklayer and part of me is sort of Liza Minnelli and part of me is just Amelie.  I still shift between highly sensual, healthily sexual and asexual modes.

There’s definitely a male Donna a female Donna and a genderless Donna in me but they seem to have a good working relationship in there now.  So I can relate to the GLBT community, not because of Autistic Pride and its identification with Gay Pride, but because of sexuality and identity differences to a social majority.  I also look at my parents though.  My father was wildly flamboyant, a real showman of the Willie Wonker-Jim Carey type.  My mother strikes me as a very masculine character.  So I think I may have been bound to be a bit crossed over anyway.

It is true that those on the autism spectrum have a higher incidence of sexual and gender identity differences to the general population.  I also think that if you have these differences AND you’re autistic and if you don’t understand, accept and live with your differences as equal to other people it only adds to the confusion.

There are many situations within your book where I feel you were mistreated, do you feel in part this is/was your naivety, delayed development, and how did you find closure of these situations?

Sometimes I gave as good as I got but often by default because in real-time processing I had no idea other people were being so effected by my chaos.  I do feel I unreasonably expected people to work from my ‘normality’ without having to explain it to them or help them adapt.

But this is also a mirror of what most non-spectrum people expect of those on the spectrum.  Thing is it’s their social majority which usually equates to those with autism being ‘wrong’ or ‘broken’ or ‘abnormal’ and I get annoyed and frustrated with that, sure.  But also realising how my co-morbids are just damned hard for me and confusing to others has helped me chill out about their frustration with and exploitation of me.  Closure?  The phrases ‘shit happens’, ‘life is short’ and ‘such is life’ all help.

Within your book you mention filming and conferences, which I know like myself you would of found exhausting, what I wanted to ask do you over prepare, play the part in a way or now able to be yourself in unfamiliar situations?

That’s an interesting question because it used to be like this… if you were too terrified to do something, you could still close the door to your room or your body and play out how you would have or could have done it had you not been crippled by Exposure Anxiety.

And it was like that.  Exposure Anxiety would have made it impossible but the fact I could ultimately disappear into my own world up on the stage or even with a camera rolling meant that I could show the audience who I was inside.  Then on the breaks, there I was, back to scared Donna, so that was wild, but these days the Exposure Anxiety is progressively managed, especially as singer with Donna and The Aspinauts where I’m even more ‘out there’.  In a way, its like being compelled to keep climbing Everest because when you stand on the side of those mountains you prove you are free, that you are bigger than all your obstacles.

Someone advise me to stick with likeminded people and within your book I noticed you tended to do this, well orientate towards them, was it consciously or a kind of sense of knowing that drew you to these individuals?

I definitely had spent my life segregated from those ‘like me’ so I had a great need to find my clan.  Of course even those people are mightily diverse and no two autism ‘fruit salads’ are the same.

But I was far more interested in finding those who were spiritually like me.  This meant people who felt and sensed their world.  It meant people who mapped people, who felt their environment and people who were natural Taoists, naturally into equality, who looked across at you, not up to you or down at you.  It meant realists, pragmatists, artists, and those who dare see beyond what they want to see or are indoctrinated into seeing and those who seized life and cast off excuses, those who dared to be individual and more than their labels.  So I guess I was exploring souls.  Still am.

The death of my mother made me question many things, in fact you could say life as it was for me and that’s what lead me to discover my own true identity.  Within your book you experience the sudden deaths of people close to you, how did that impact at the time and has it change your views on life?

Wow.  There were four deaths in Everyday Heaven… sort of like Four Funerals and a Wedding… could have been its alternative title!  But all of those deaths took me to different spiritual places.

‘Jackie Paper’, my father was the death of someone you are part of, who you see in the mirror, who lives on in you.  Yet I had had 2 weeks to say goodbye down the telephone to a man who was dying at just 59, a man who had just begun to spiritually ‘wake up’ and who had so many keys to family history and where so much of me comes from.  And yet because of my self imposed exile from the rather ‘underclass’ family I came from I couldn’t just fly back the 10,000 miles to be there.  That was so wrenching and I’m sure really hard for those back there to understand, that I wasn’t snubbing them, I’m just not geared for that sort of life or the ‘patsy’ role I’d inevitably be offered within it.  So that was about identity and choices and the heavy weight of those choices but also the morality of Jackie Paper who knew all of this and told me, whilst dying, that it was ok and I should stay put, stay safe where I was.  Wild stuff.

The death of Margo was that of having the first ‘best friend’ I’d had since my early teens and then having that sunshine, that sparkle, that magic playmate, that big sister for only a year before she died from a brain haemorrhage suddenly, at just 45 years old.  She taught me how life is short and not to confuse co-dependency with love and how to let others throw their life down the toilet because only they can choose not to.  She taught me to value the warrior that I was.

Losing Monty, though he was a cat, he was one of those cats that you feel if he were a human he’d have been your closest friend, your brother.  He was so clever, a real thinking cat, the most sensing cat I ever knew.  It was like he saw other worlds, as if his soul were that of a human or a lion or a dog or a horse yet his body was still that of a cat.  He would check my hand when playing cards then go check that of my opponent.  He would make such clear behavioural statements about the choices I’d make.  He was really conversing behaviourally but not in ‘cat’, he was doing this almost as though he was a human soul.  And he came into my life at the crossroads of loss, literally walked to me and stuck by my side as I looked at all the other cats before finally realising what he was telling me)  and he was there through all those losses only for me to have to be there, holding his paw as he was released from the pain of cat Leukaemia and associated kidney failure.  I felt humbled by Monty and he was a reminder that some of the most important people in your life (for I consider him ‘people’) can’t stay but its the quality not the quantity.

I have a painting called The Departure which is about loss and I did it in response to all that and painting it was part of my time spent communing with these dead people at a little memorial altar I’d made to them as a resting place for their souls (or the unresolved stuff I had about my relationships with them and all they’d taught me).  The painting shows a soul leaving the dead body behind but it leaves behind this glitter dropped unseen over the mourners.  That glitter is the gift left by loss, the gift of nostalgia which is never so strong as after loss.  And its that nostalgia which is part of how we commune with the dead within our own world and through our lived lives in how we pass on the impact these valued people had on us and through us.

Exposure anxiety / Sense of self, this is some think that held my attention, as I myself at times withdraw , as reality as often expected at times can be exhausting.  Do you still suffer from exposure anxiety and /or how do you deal with it and how would your describe you “ sense of self”?

Going GF/CF, low salicylate, low sugar, having no caffeine, taking omega 3s, mega B complex, L Glutamine, Calcium-Magnesium as well as the small amount of Seroquel (used to treat mood, anxiety, compulsive disorders) I’m on, all took away percentages of Exposure Anxiety.  I still live with it and without the medication there is so much I’d still not be doing.  Exposure Anxiety still causes involuntary avoidance, diversion and retaliation responses which play havoc with functioning, but now instead of it being high level and daily, its lower level and intermittent – what heaven!

Sense of self?  I feel I have a strong personality and really solid sense of self.  But I’m still very fragmented and my identity is really broad and full of striking contrasts.  Of course agnosias (meaning deafness, meaning blindness), food intolerances and allergies, co-morbid mood, anxiety and compulsive disorders all alter who I am at different times, put up tempo on some personality traits, subdue others.  I’m conservative yet surreal.  I’m reclusive yet out there.  I’m practical yet wildly artistic.  I’m vigilant and self protective yet love deeply.  I’m capable of great detachment and neutrality, yet I’m extremely passionate.  I’m a lone wolf, yet I’m loyal and supportive.  I suffer from existential angst at being a human on a planet destroying itself, yet I feel deeply for people.  I keep really clean boundaries in my life, yet I adventure almost anywhere.  I’m mostly manic yet people have found me really grounding.  I’m sensible and stick to what works yet I love being daggy and silly.  I’m addicted to routines, yet I’ll try most things at least once if only to find out how and if they work.  I like social belonging but love diversity even more.  Yet I still feel I’m one person.  A patchwork quilt is still one quilt.

The invisible cage, when did you realize that your own life was part entwined within the boundaries set by Exposure Anxiety and that this was part of your experience of being on the autism spectrum, yet it fought against the freed expression of who you are/were?

We need to distinguish between having an ‘autistic personality’, having isolating degrees of sensory-perceptual disorders, having Semantic Pragmatic Disorder, having aphasia or Selective Mutism or Oral Dyspraxia, and having involuntary behaviours associated with co-morbids including Exposure Anxiety.

So one can be on the autism spectrum and love being an autistic personality.  One may also have aphasia, Selective Mutism or Oral Dyspraxia yet have typed communication and be quite happy with one’s life.  One can have also significant visual, verbal or body agnosias (meaning blindness, meaning deafness, body disconnectedness) and still be content with using whatever senses still work with meaning.

One can also have a manageable degree of Anhedonia, Alexyithymia, Schizoid-affective disorder, depression, rapid cycling bipolar, Tourette’s, OCD, social phobia, agoraphobia, generalised anxiety disorder, Reactive Attachment Disorder,  Separation Anxiety, Schizophrenia, personality disorders or Exposure Anxiety and appreciate life.

But where co-morbids like Exposure Anxiety are overwhelming it can overpower the expression of or even experience of the self and the frustration, isolation, confinement and ‘paybacks’ so outweigh the enjoyments in life that it gets really hard to imagine a full life until these beasts are tamed.

Of all the co-morbids, the compulsive and involuntary avoidance, diversion and retaliation responses of Exposure Anxiety are those most commonly described as communicatively, behaviourally, socially and emotionally ‘autistic’ in the Kanners sense of the term and Exposure Anxiety is most commonly recognised in those with Fragile X but I’ve heard from others on and off the spectrum who experience it to different degrees.

But the term ‘autistic’ has come to mean everything from Dyspraxic with aphasia to any engineer with Obsessive Compulsive Personality Disorder and Social Emotional Agnosia (inability to read facial expression and body language) so the term is almost meaningless now.

Of all your complex interesting neurological differences, conditions what one do you find the hardest to deal with and what do you enjoy most about being the unequally able person you are, you?

Rapid Cycling Bipolar is heaven and hell.  I love the mania but I have acute mixed states which are a dangerous mix of mania and depression where it is really hard.  The tics don’t bother me unless they are breathing tics.  The OCD is managed these days.  I still struggle a lot to easily say how I’m feeling but through typing and arts it comes together now.  Agoraphobia gets annoying but it’s survivable.  The Exposure Anxiety is at a managed level now though associated avoidance of eating gets to be tedious sometimes.  The self injury issues associated with my co-morbids are almost all gone but I do still occasionally involuntarily bite or slap myself.

Babysitting gut, immune, metabolic disorders is tedious and socially frustrating but I don’t stress too much about it.  Buying and taking supplements to stay on top of that stuff is annoying.  The dyspraxia/dyslexia stuff is frustrating re following any instruction or mastering new things.  The meaning deafness, meaning blindness, face blindness and body agnosia stuff is all survivable but requires adaptations.  My rather autistic personality has some internal personality clashes but mostly all of me gets along fairly well.  Developmentally I’m at home with attachment, with expression, with connection.  So that’s all good.

What do I enjoy most about being me?
Well, I love being a silly, surreal, being creative, laughing, living life to the full and climbing those ‘mountains’.

Warmest regards Alyson Bradley
Aspergers Parallel Planet – http://www.asplanet.info

Thanks for the interview Alyson.  You’re a fab interviewer and your questions were really good.
Donna Williams *)