I heard from Jen, a reader who had read one of my 9 published books, Somebody Somewhere.  It was an international bestseller and reached number 1 in Canada, Japan and Norway, and was the second of four sequels to, Nobody Nowhere, which had reached number 1 in USA, Canada, Japan and Norway.  So I invited Jen to ask her 5 most burning questions about it.  Here’s our interview:

JEN: Here is one of my 5 burning questions about your book, Somebody Somewhere.  One of the thing I relate to is what you call your “Characters”.

Your book Somebody Somewhere is so close to my story it’s frightening.  But there are a few differences that I don’t know how to ask you about.  I’ll try.  (of course you don’t have to answer)  I realize that to me you are one person who I view as the only person I know who has my story and seems to have escaped this hell.  But to you I am one of millions who have wrote… so I get it.

1)       You mention your “Characters” Carol and Willie who faced the world for you.  I understand this completely.  I have Characters.  I call them “parts”.  However I have several more “Parts” then just two.  It offers me much more help to choose from but complicates my life more as you can imagine.  The dx of Multiple Personality Disorder has the criteria of two or more distinct personalities that present to the world.  (ok not DSMIV exact terminology but you know what I mean).  So do you consider yourself having had MPD and integrated.

DONNA WILLIAMS:

Hmm, just for the record I can say that although someone started a false rumour that I had, I have NEVER had a psychiatric diagnosis of MPD nor any identity disorder.  I think that’s because it was all part of the ‘disturbed’ label which I got in childhood and followed me until my 20s when I got diagnosed with autism (due to significant language processing disorder and acquisition of functional speech in late childhood).

I can say that of Oldhams 16 personality traits, whoever the me is now identifies with the Solitary, Vigilant, Idiosyncratic, Artistic, Self Sacrificing personality traits as my 5 dominant personality traits.  I can identify some lesser personality traits:  the Serious, Conscientious and to a lesser degree the Devoted, Sensitive and Adventurous personality traits.  Yet, if you ask me to define the traits of Willie, Carol and Donna, I’d define them like this:

Willie – Solitary, Vigilant, Serious, Conscientious

Carol – Idiosyncratic, Artistic, Self Sacrificing, Adventurous

Donna – Sensitive, Devoted, Artistic, Idiosyncratic.

So I think my traits were once really compartmentalised, really big divisions.  I think the term MPD is outdated.  Because we all have multiple/numerous personality traits and to a degree all manner of places and people can bring out different sides of us.  Willie studied and defended and embodied complete distrust of the world.  Carol dealt with all sexual abuse, interactions with men and was the adoptable mascot of mother replacements.  Donna had sensory fascinations and would accept anything without question or struggle.

I think I fitted D.I.D – Dissociative Identity Disorder – but because that’s part of severe PTSD in childhood, I prefer to see myself as a survivor of Post Traumatic Stress Disorder complicated by Reactive Attachment Disorder (all three manifestations of it) and that all three ‘Donnas’ (for Willie, Carol, Donna are today all extremes of one Donna) were autistic in very different ways.  Willie became the left brain intellectual self and the systematician, Carol the capacity for rote and characterisations, Donna the right-brain intuitive sensate in a world of pattern, theme and feel.  So, diagnostically, Willie could have fitted Asperger’s, OCD and a tendency to rage. Carol could have fitted ADHD and Rapid Cycling Bipolar with Semantic Pragmatic Language Disorder and receptive language processing disorder.  Donna would have fitted visual, verbal and body agnosias amounting to LD in a picture closer to classical autism.

Collectively their combination manifested as Exposure Anxiety in different forms.  But I have met children with autism who are a completely different type of ‘autistic’ at home to the one they are at school.  Something in the two different physical, personal environments and their different patterns and demands, brings out strikingly different sides.

There is also the question of whether significant early trauma can diminish neurological integration, setting up a cascade of developmental and information processing challenges.  They have recently found Reactive Attachment Disorder in a high proportion of children with autism, so it’s hard to know which is chicken, which is egg but on my father’s side are other people on the autism spectrum who didn’t have my environment, so there’s also an argument that if a child has significant processing challenges, then the incoming messages are fragmented or missing so Reactive Attachment Disorder is a higher associated risk.  Am I ‘integrated’?  Hmm, a patchwork quilt is still one quilt.  For the most part I function as a fluid whole.  Sometimes parts of that quilt fall off the bed, so to speak, but mostly they stay on.

JEN:

If yes … you never mentioned it and even stated that it was not that but its exactly what I experience.  I thought maybe you just didn’t want to bring attention to that because everyone would say “she’s not autistic, she’s multiple”.  I would not blame you and I actually agree that even if it was a comorbid dx, it would most likely dilute the autistic dx and the experience and education you have to offer.  So I truly don’t want you to post a reply if you feel if will not be in your best interest.  I understand.

DONNA WILLIAMS:

No, it’s a good question.  In fact having three relatively compartmentalised ‘minds’ has likely contributed to the TYPE of autie I am.  For example, my arts are more prolific, diverse and ‘other worldly’ than many non-spectrum artists.  My text books are used as training texts in courses for special ed teachers and psychologists, yet I only have a Dip Ed.  I have a deep resonance with things and an intuitive Taoism which many spiritual seekers have taken decades to develop.

I think my compartmentalisation allowed each of these areas to develop to a higher level than if my mind functioned as a cohesive whole.  But the main difference is that each is no longer fighting with, seeking to eradicate or control the other.  This has allowed insight, internal diplomacy, teamwork if you like, at times a time share arrangement.

It’s more like tides and undercurrents, an extreme of similar forces in all people, a hypernormality perhaps, and as such a magnifying glass for what we all experience.  Am I afraid to be a complex presentation of autism?  No, because autism is ALWAYS a FRUIT SALAD and those fruit salads differ.  Mine had agnosias, language processing disorder, co-morbid mood, anxiety, compulsive disorders, gut immune, metabolic disorders, neurological integration issues AND PTSD and RAD in it along with some pretty autistic looking personality traits (solitary, vigilant, idiosyncratic, artistic can all look ‘autistic’ when extreme).  So be it. Anyone in doubt can view all my childhood photos on my website.  They tell the story.

JEN:

I am integrating my parts (characters) experiences for the first time in 20 years of past futile work.  The autism puzzle piece has blocked my progress for so so long.  Nine months ago I began working with a therapist who seemed to understand the missing autism piece and it’s associated conditions and worked with me on communication and sensory problems.  Unfortunately she is neither an expert in Autism nor MPD.  Fortunately she is extremely intuitive and seems to sense the “next right more”.  It is a painful process Donna.  But worse it’s a lonely one.  I have two small children.  And I have to join their world and it’s agony.  Sorry I guess today is a bad day to be someone who can put a question in the form of one sentence.  I’m sorry.  I have the question in my mind but not sure if I said it.

DONNA WILLIAMS:

I didn’t have children because I had immune deficiencies but also because each of the parts of me had their reasons.  There are parts of me that are an ideal teacher, big sister, entertainer, pixie, grumpy grandpa and kids really take to some of that.  There’s other parts of me so solitary, aloof or socially claustrophobic I new I had both abandoner and guilt gatherer imprinted deep in my soul.  I’d have run away AND I’d have felt overwhelmingly guilty for doing so.  I have the best of both worlds, absolute solitude and involvement with children as an autism consultant in my capacity as a teacher.

JEN:

2)       You are amazingly creative… many Autistics and Multiples (term for people with MPD) are.  I feel perplexed by art.  I feel overwhelmed with it’s lack of boundaries.  I can identify exquisite art and know what is superb art and artistic abilities but can not generate it.  I agonize over simple play with my children or anyone.

DONNA WILLIAMS:

Yes, there’s a part of me, the part that was Willie, which is quite the grumpy grandpa.  Purely practical, a distaste for intimacy, allergic to clinging, not natural mind for play, only teaching.  The part that was Carol can go into a wonderland of characterisations and can be the idiosyncratic playmate which is like meeting a pixie.  The part that was Donna is only good at being in parallel, the interface facility is not sociable, so I basically walk off to play in solitude.

JEN:

Alone is better but how do you learn to be creative alone.

DONNA WILLIAMS:

Goodness.  I guess it comes down to personality traits.  I have the artistic trait but until my 20s-30s Exposure Anxiety really blocked it’s expression.  And that defender (Willie) had an iron grip on expression and nothing was allowed to build bridges (and arts could attract people, invite them in, that was against his ‘law’).  So it’s really all about whether there is an artist in there, an imprisoned one, and which part has the keys to the cell.  From there its about negotiating new contracts.

JEN:

How did you learn about all the things you do if you also resist people contact.  On the other hand I am a complete computer geek.  Because I have no contact with people there and my computer and internet taught me the things I needed to know.  I fix computers now.  But I can not decorate a room or choose a color for anything unless it’s in perfect spectrum compliment of the other.  What is your secret.  How did you open the door of your creativity or was it always open?

DONNA:

The systematician in me is the spy, the fly on the wall, a master of all peripheral observation of pattern.  So even if it had no connection to the emotional (including arts) it was a master accumulator.  Then the emotional self had no capacity for conscious reasoning or holding conscious thought.  So it was a real dilemma.   That’s where internal diplomacy comes in. I always had ARTISM, but didn’t express it as art until adulthood.

JEN:

3)       You talk about how difficult it is to communicate with people.  I agonize over that.  I long every day to stop talking and live deaf so no one will talk to me with their voice and I wont have to either.  But I’ve faked it for so long with nods and panicly piecing words together to find meaning.  I’ve learned to monologue and listen with nods but verbal conversations invoke such terror.

Asking for help via verbal brings torture to my soul of a million “whats” and frustration that reverberates like an sonic blast seen in movies that seemingly spread endlessly destroying everything 360 degrees of forever.  I have faked it for so long and have more “characters” than you to keep it going that I can not shift to sign language and written paper request without looking like I’ve truly lost my mind.

DONNA WILLIAMS:

Yeah, that was a real big one for the part of me that was Willie.  That part was real closed shop, real tight ship.  Nothing was allowed to indicate impairment and that part had little fluid emotional expression (except annoyance or rage 😉

So I didn’t sign until my 20s although I remember signing to myself since childhood, but always alone, and in another ‘mode’.  But, yeah, the part that was Willie was really ashamed of, yet protective of, the parts of me that clearly had disabilities.

I don’t resent that, that mechanism kept me alive and out of a children’s home.  That part is a warrior who lived for decades without accepting any emotional nourishment from the world.  That’s brave, I have to respect it.  But it also needed to develop, to soften, and it’s got a warmth now.

And the Carol part was so fixated on acting ‘normal’ to survive and being accepted by mother replacement types, that it had a strong distaste for the more obviously disabled Donna, so Carol’s world was all about shrugging off all evidence of disability or leaving before it would all show through the cracks, so in that mode I was rarely in a room for more than 5-30 min, and I think the Carol side felt Donna was a ghost which was haunting her, something to be kept for alone spaces where it could come out without loss of all that part valued; survival, inclusion.

But, yeah, speech…I used to feel agitation at having to keep using it, because it takes me more effort than most people just to structure the damned sentences (I got functional speech around age 9-11) and that proud autonomous part wouldn’t tell people, excuse me, this is just real tough work.

But these days I guess I have an internal FAMILY, an internal HOUSEHOLD, and they band together for the good of the whole, so I do sign when I need to, and often cease blah when I need to and walk off when I need to.  It’s about internally negotiating the right to permission.

JEN:

When verbal breakdown occurs I can feel the inside “ME” falling to the floor rocking back and forth with no no no no no no no as the only voice they have. But my survival demands I hide and fake something “normal”.  I usually get angry with my “Willie” part or breakdown and cry speechless and literally run away like some emotional broken child (that’s a new reaction by the way).

DONNA WILLIAMS:

Yeah, I can definitely relate to that.  The other response was a sudden involuntary punch or slap to my face or head or a bite to my hand or arm.  The shame of these responses was partly what brought the Willie aspect ‘to the negotiating table’.  Because that part is completely impersonal, detached, logical, practical, it has to have ‘sensible reasons’ to negotiate.  It is really military.

So it’s about respecting it’s language, it’s fear of intimacy, of fuss, it’s complete investment in autonomy, responsibility.  Once you get the internal family able to truly listen to each other that’s the starting point.  Like the part that was Carol is a raving hedonist so was so disrespectful of the serious adult part.  And the Donna part struggled so much to put any concepts, thought or language to huge emotional states and patterns, there was little ability to cope with the antithesis.

But the question was what did it take?  So for example, it took Willie to gain humility, warmth and humor.  It took Carol to gain enough seriousness to look ‘her’ life in the face and stop looking for mother replacements and actually embrace the disabled part of the self she was socially ashamed of.  It took Donna to dare incarnate into body and mind and to agree not to smack, slap, bite every time language or internal mentalising was too intellectual a challenge to expect… so out came the rocks, the plastic cows, the match sticks.  All had different forms of rage and all that needed to be subject to internal agreements to help each other and diplomacy.  I healed the chasms between internal family members.

JEN:

I want to join the world as you have or seem to have.  But can you tell me something.  Do you appear to function better now that you are the real and whole YOU.  Or did things get worse.  Or did they just appear worse but you feel better.  I’m sorry.  Ms. Williams… I am asking questions in the dark from the dark and If you read this and think “WHAT THE HECK IS SHE TALKING ABOUT”   I would not be offended, nor would it be the first time.

DONNA WILLIAMS:

Your question is a good one.  At first, yes, people felt I appeared ‘worse’.  This was largely because nobody had wanted the ‘Donna’ part.  They had always seen that as ‘Donna’s having a breakdown’ or ‘Donna is regressing’ or ‘Donna has lost it’.  So if that part was breaking through, the part that was Willie would usually get us the hell away from other people before the cracks got too obvious, or the part that was Carol would feel the earthquake, so to speak, and do a runner.

And the same was true in mid childhood to my teens.  It was by mid childhood that the divisions were really obvious and if we had Donna ‘episodes’, people would almost treat it as part of ‘the disturbed child’, ‘the psychotic child’, ‘gone feral again’.  So in between the teacher would try and teach and hope that side didn’t emerge in all it’s glory.  And at home, that part would be ordered to its room not to emerge or sort of pitiously tuned out.

I could feel the shame and disappointment like a heavy threatening storm cloud around me and that constant pressure by the intellectual and rote selves that I ‘stop being a spastic’ or we’ll all end up in a children’s home, was really constant.  So I’d keep trying to at least stand, walk, dress, feed now and then.  Some things like toileting, washing, speaking, those were much harder.

So Willie did litanies and Carol did characterisations and songs.  I had sign, but it was only permitted when alone.  So, for me to become whole, yeah, ‘they’ had to set aside fear, shame, pride, and accept me as beautiful, valued, something with potential.  And so they won respect and trust and fondness from that feral Donna part too.   I guess I knew that if we didn’t all learn to function as a whole, the Carol part was likely to suicide and the Donna part was likely to starve itself to death.  So ultimately, no degree of loss was higher than the risk of total loss of life itself.  I think we all collectively felt great despair at the awareness it would all end pretty tragically if we didn’t work together.

JEN:

5)       Ms. Williams….. is “The World” as horrible as it feels.  Every experience with it and it’s people makes me feel the desire to end my life so deeply to avoid the worser pain.  How did you stand the world and it’s people interactions back in “Somebody Somewhere”.  Did you feel the pain when the family you lived with did not understand you and it broke pieces in your world.  Do you feel pain like that.

DONNA WILLIAMS:

Well, I’m really lucky because since being more whole I have met some wonderful humans, many of them non-spectrum.  It’s a matter of finding people who aren’t looking for pets or projects or flags to wave.  Finding empathic, humanitarian, egalitarian people with good social boundaries who are diversity friendly… they really do exist.  They’re not common, but just to know they DO exist… I called them Gadoodleborgers, Bridgekeepers, translators between worlds.

Did I feel pain of being psychologically smashed up?  I think there are scars, sure, but the thing about dissociation is that scars give birth to new parts of the self.  Willie and Carol were born as a result of deep scars and unsolvable dilemmas in survival situations.  Each has their own greatest painful memories and each is hugely different.  But today I have access to all their memories, they’re not as compartmentalised.  The part that was Willie was like a big computer bank, but not with emotional content intact.  The part that was Donna had all the emotional content but none of the words or awareness or categorisation.  The part that was Carol was a data bank of rote but devoid of true mind or emotion.  So I guess I remember disocciation since at least age 2.  I was assessed in a 3 day inpatient observation at age 2 as psychotic back n 1965, so who knows how much dissociation they were witnessing, and fact is that swinging between the three states in a functionally non-verbal child would have looked pretty autistic and being highly dissociated at age 2 would have meant a big destruction to the capacity for neurological integration necessary to ‘normal’ development.

I had been ill since 6 mths (infections and jaundice) but by age 2 had been through an array of things deprivation of language, contact, light, physical and a series of sexual abuse by a regular visitor to the house.  As part of that sexual abuse I had been through episodes of suffocation (oxygen deprivation) and by age 3 had also twice been rescued from the bottom of swimming pools.  So that’s a heck of a lot for a pre-verbal young kid to go through neurologically, physically, emotionally and come out neurologically intact quite aside from having no regular or normal nutrition until age 9-11.

JEN:

The misunderstandings of “The world’s people” make me feel like an alien that has left and lost on this world.  I can’t get in and I can’t go home.  You said there were many people like me who wrote you and said the same thing I said…that your book was like you got inside my head and wrote my story.  Where are these people ms. Williams…. Where are they?  There is no one here.

I live in Los Angeles area.  I have searched.  There are people with Aspergers which I’m finding I’m not as like as I thought.  I am very close but I’m not outward like them I am inside my world and very aware of “The world” that I recoil from.  Where are what you call High Functioning Autistic Adults.  There are groups online for Aspies but can’t find Auties.  Well HF ones.

DONNA WILLIAMS:

You’re right, there are lots of Aspies, most kind and wonderful, some heirachical, nasty and almost all overwhelmingly intellectual.   Through the autism friendly dinner clubs formed via http://www.auties.org I’ve met at least 2 highly sensing HFA people who are NOT Aspie and three highly sensing Aspies.  Even then, only one of those is from my kind of history and also has disocciation; Caiseal Mor.  If you haven’t read A Blessing And A Curse, you’ll likely find it a great companion to Nobody Nowhere and Somebody Somewhere (there are another two in that series; Like Colour To The Blind and finally Everyday Heaven ).

I deal with stuff like Rapid Cycling Bipolar, Tourette’s tics, Exposure Anxiety, OCD, Agnosias (visual, verbal, body ones), gut, immune, metabolic disorders, Reactive Attachment Disorder and Post Traumatic Stress Disorder in my Autism Fruit Salad and most Aspies have social emotional agnosia but none of these other things and my abundance of solitary personality traits (solitary, idiosyncratic, vigilant, artistic) combine to create a more ‘autistic’ (the adjective) character than their conscientious, more Aspie natures, so they are geared for information sharing.  It’s just different.

So, I guess people like you and I just have to accept we are really oddities, such complex fruit salads that we’d rarely find them in so called ‘high functioning’ people because most with that level of challenges have killed themselves or are in psych wards or drifted to the invisibility of the streets.  But all I can say is don’t YOU do that, because you KNOW you are not alone even if you are really rare.

JEN:

Los Angeles there should be tons of people but there doesn’t seem to be.  I can’t bear to step into “The World” and live in it alone.  By alone I mean as the only one who is like me.  Where are they… all the people who wrote and said they were like you.  I am glad there is you, really I am.  But I am not so foolish to think that I can know you when you are Author, Singer, Artist, Traveler, Educator, Consulant, etc.  When you talk about all you do and I see all you do, I think there must be 50 you’s.  How do you do all this.  It would take me a lifetime to write one book or a piece of artwork I’ve seen of yours.  How do you travel like you do and not crash and burn and crawl up in a ball and hide for a year.

DONNA WILLIAMS:

Stumps me too!  I guess a level of compartmentalisation means nothing is cumulative.  Each moment or situation is still quite like a new day. Do I crash and burn and withdraw?  Yes.  After a lecture I often won’t speak the next day.  After a tour, that’s more like a month.  After 2 hand shakes I feel like biting the 3rd so I just tell them ‘no more skin right now’ or after my language batteries go flat ‘sorry flat batteries’.  My productivity is certainly bolstered by quite strong bipolar stuff.  I have always tended to fairly constant hypomania even now I’m medicated.  With extreme manic peaks and dangerous depressive mixed states if not medicated.  Unlike those with conventional bipolar, mine manifests as Rapid Cycling, so the energy levels can be pretty wild several times over a day.

Can I be a friend?  Be here for specific people.  Well, I’m sure that has been so for some of my fellow travellers but eventually they leave the nest and just drop by now and then or hang out on the blog which they see as their living room.  I hope that those who relate to your experiences do leave comments for you.  Also, just for the record, I’d say the 2000mg of L-Glutamine I’m on has been essential to helping me be less feral, more able to stand the world, even love it.  Won’t work for all but it’s great for me.

JEN:

Ok so it’s 5 burning statements with questions somewhere in there somewhere.  Sorry.  Truly.  If for nothing else… I’m so incredibly grateful for your contribution that even if there is no one else in “The World” that I can find to not feel like such an alien… at least I know you were once here in “My World” and trust that you now live somewhere in “The World”.  Sorry if all this sounds stupid.  Today is a bad day and was probably the worst day to write this to you, or to write to anyone on the face of the planet.  So……sorry.  Please forgive me in advance.

Take care,

J.

DONNA WILLIAMS:

You have been welcome, no forgiveness required.  I live part time in the mainstream world, but probably still 80% of my life is solitary.  I’m married to a wonderful warm, quiet and solitary Gadoodleborgonian Aspie.  I’m very lucky.  I wish you well on your journey too.

Warmly,

Donna Williams *)

http://www.donnawilliams.net