Touching the heaven of shared social; a memory of Bernard Rimland
Autism expert Bernard Rimland had time for people. And he made time for me.
When, Nobody Nowhere, the first of my 9 books in the field of autism came out, Bernard befriended me over the phone and I finally met with him in person in the US. I would call him Bernard Rimland and he would remind me to call him Bernie, but I never did.
He was a warm, jolly, earthy human being who saw me as I wished to be seen, not a famous person, just a person with autism among many people with autism.
Being one of the first mainstream published cases of a person with autism dealing with immune deficiency and dairy, gluten and salicylate intolerance (and dairy allergy), Bernard wrote a foreword to Nobody Nowhere at a time when the autism stereotypes were of silent sullen middle class boys and still too narrow and archaic to easily embrace a working class girl with a vast repertoire of songs, advertisements and jingles who had been labelled psychotic in infancy, disturbed throughout childhood and finally diagnosed with autism in early adulthood.
When I learned new things that might help others dealing with metabolic, gut and immune disorders, I shared it with Bernard. When I went onto an amino acid/anti inflammatory/smart drug called Glutamine and after 30 days experienced my first conscious experience of a simultaneous sense of self and other, I phoned Bernard excitedly, overwhelmed, shocked at this new cognitive experience and what it finally taught me of society. “I have touched the heaven of shared social”, I burbled to Bernard down the phone, “I know what it is to be with… not ‘at’, not ‘in front of’ but ‘with'”.
Today, hearing Bernard Rimland has passed away, I’d like to share with the world that this man worked so hard for physically ill children with autism (and not all people on the autistic spectrum are physically ill but those who are really needed his work, really benefited from it). Whatever the arguments of treatment versus culture, Bernard Rimland certainly celebrated the personhood of his son, Mark Rimland, an autistic artist, creative in his own right, but also had the clarity to care about the often serious medical challenges of those with autism who dealt with serious health problems.
Wherever you are ‘Bernie’, shine on.
… Donna Williams
autistic author of 9 books in the field of autism.
There may be many obituaries for Dr. Rimland; there may be many bouquet of flowers; there may be many condolence meetings. But your words, we think, is the most upstanding words of respect for Dr. Rimland. We share your thoughts and words. Dr. Rimland showed us the path. We are merely trying to follow it. Human beings are not immortal but Dr. Rimland’s death is a great loss. Through your words we express our grief and respect for Dr. Rimland whose contribution cannot be equated with any other person.
Hello Donna,
Just wondering about what you wrote:
“When I went onto an amino acid/anti inflammatory/smart drug called Glutamine and after 30 days experienced my first conscious experience of a simultaneous sense of self and other…” ““I know what it is to be with… not ‘at’, not ‘in front of’ but ‘with’â€.”
Really nice.
When did this “first conscious experience” occur? Was it at the 30 day period? Up to the 30 days, there was no experience, and then it happened? Did it happen on one day, or at a particular moment?
I had always talked ‘at’ or ‘in front of’, not ‘with’. I tried really hard but mostly was gripped with involuntary avoidance, diversion, retaliation responses so it was a big struggle, and then I just couldn’t hold on to their words and then find my own so mostly just tried to ‘make a match’ kind of thing… felt very out of my depth with blah all the time.
When I had this experience of simultaneous self and other, it lasted about 45 mins… long enough to really grasp consciously that wow… this is some planet I’ve never held long enough to understand. I wrote of it in Everyday Heaven if you’d like to read the whole thing.
But essentially, I managed to experience the conversation of two other people WITH myself, shifting back and forth, on the same topic, with more than just guessing and matching, and actually had personal thoughts/feelings in response and could process their speech AND think/feel at the same time something more than just working out what THEY said or forming my own track.
It was incredible, spiritual, moving, scary and changed everything I knew about the non-autistic world’s desire to converse (as opposed to speak).
It wasn’t sudden and it was only on reflection that it had been 30 days on the Glutamine. Hints of this ability were emerging, but when the 45 minute session of simultaneous self and other happened, then I really GOT IT consciously.
🙂 Donna Williams *)
So the experience lasted 45 minutes and then was gone? Has it occurred since then?
no, it didn’t disappear completely… it just faded back out to all self/no other and all other/no self again… back to lacking a simultaneous processing of self and other… it remains something that now fades in and out ever since then.
Before it was almost always an absence of simultaneous self and other…I’m sure I had it for seconds, maybe 1-2 minutes at best, but it didn’t last long enough to really EXPERIENCE it with full consciousness. So it was foreign and not part of ‘self’ or ‘normality’ (not my normality anyway).
But since Glutamine, the capacity to process SOME simultaneous self and other has increased to a level that I can hold it for 3-5 minutes much of the time before it fades back out, sometimes as much as 30 minutes but 45 minutes is rare. So in this sense my world shifted from a more autistic to a less autistic one.
In any case it changed everything, which is what I wrote of in Everyday Heaven.
🙂 Donna Williams
hello hello –
are you sad your experience of being “with” has not continued? It seemed to allow you to do much better with people. And now? It’s not as good now, right?
This would make me very sad to not be able to have this ability all of the time.
How do you feel?
In your loner article, you don’t seem that interested in socializing. WOuld you be if your experience of being “with” was still happening?
yes, after the first conscious jolt of it, I cried my eyes out after it left again, angry that I’d get to hold it then lose it. The full account of that is in Everyday Heaven.
Now? I eventually feel pretty ok, as if I’m floating between autie and non-autie perceptions (or perhaps between autie and Aspie perceptions as Aspie’s tend to hold simultaneous self and other for longer than many people with autism can).
I’m not one to despair long over things I can’t change. There’s no use in such things except masochism.
Yes, I would certainly socialise more if a) I didn’t also have an auditory processing and language processing disorder and b) if I consistently could hold a simultaneous processing of self and other without extreme effort.
but as a personality, I’m extremely adapted to having a very whole and full life with little reliance on socialising… guess that’s most artists.
Hence I feel ARTism has overtaken much of my autism
🙂 Donna Williams
http://www.donnawilliams.net
Regarding your “simultaneous experience of self and other” … what you describe above …
Do any of your BPI colored lenses help to bring this back in any way?
Two,
Again with regard to your experience … when it was happening in the past, what was happening visually?
As elaborated on in the books: Autism; An Inside Out Approach and in The Jumbled Jigsaw, reduction of sensory flooding and associated cumulative information processing delay and subsequent information overload, leads to a reduction of information processing issues on all sensory perceptual channels.
🙂 Donna Williams
http://www.donnawilliams.net
I have abilities to experience self and other because my persona is split……….
autie-aspie………
I can’t put words to how it feels………except that it just is……
Athena Ivan
Donna,
I’m an autistic man raising an autistic child. A recent NIH study mapping the autism genome discovered a link with glutamate neurons. This was the largest such genome study. I’m interested in glutamine as a result. Can you please email me what you were taking, over the counter or prescription form.
CS
please visit the new blog article I’ve posted on this blog site about my use of Glutamine (just type glutamine into the search bar).
🙂 Donna Williams
http://www.donnawilliams.net