Face blindness in autism and beyond
 We all have had that experience where we know someone but just can’t remember where we know them from. Face Blindness is like this except it happens all the time, even with people you know really really well.
When I was a child I recognised people by the color they wore. I’d get lost constantly in the supermarket, taking hold of some stranger’s clothing only to end up distressed because their voice or walking style then didn’t match the one I expected from the person who was meant to have this color, the one who’d brought me there.
So I learned to find the book section and hang out with the shiny covers and good smells. later, I diversified and learned to associate people with their movement, with their tone of voice, their smell, textures associated with things they wore and most of all, placement. If people were in their ‘proper place’ then I knew who they were.
As an adult people would wave to me in the street and say hi. I’d look away, scared of these strangers. Later a friend would see me in a familiar setting and snub me and I wouldn’t understand what I’d done wrong. It seems I’d ignored them in the street. I didn’t ignore anyone but I seemed occasionally to have complete strangers gawping at me, smiling at me, sometimes waving, some even (scarily) used my name. I never responded to these strangers but I never ignored people I recognised. The problem was there were plenty of people I didn’t recognise.
In my thirties I got tinted lenses that finally allowed me to SEE faces as a whole, not a load of fragments that I couldn’t process as a whole. But after a lifetime of meaning blindness I still couldn’t RECOGNISE people outside of their usual context. Even if they left the room, if someone with a similar beard or glasses or height came in, I’d continue with the new person as though it was the first one, only to be perplexed as to why they didn’t have a clue who I was or what I was on about.
When Chris and I got married he’d leave for work and after eight hours out of the house he’d return. But I couldn’t great him heartily because although I knew he was familiar and knew the name that went with him, I didn’t gel all this with the CONCEPT of him till I heard him speaking, saw him moving and smelled his hair. So I’d treat him as a stranger for the first fifteen minutes to an hour. It was pretty hard if he wanted to hug me as why on earth would I want to hug a stranger, just because I knew his name and knew he lived in my house. An hour later, I’d happily hug him.
Recently I was at the local shops and the shop owner pointed at a woman and little boy waving at me, smiling. I was scared. Why were these strangers seeking my attention. I was asked if I knew them.
‘No’, I replied.
I came out of the shop and the woman said ‘Hi Donna’.
I was even more daunted. I said ‘sorry, I don’t recognise you, who are you?’.
‘You don’t recognise me?’, said the woman, ‘what about him?’ she continued, now pointing to the smiling little boy.
‘No’, I said, ‘I don’t’.
‘It’s Jill’, said the woman, ‘and Harry’.
I lit up.
‘Jill, Harry’, I said, ‘hello there’.
We were five minutes walk from my house. These were my next door neighbours. I see them every week, have for years. I know who they are when they enter or leave their house, but outside of that context I don’t have a clue.
I saw my younger brother the other day. He was to meet my husband and I outside of a particular take away. We arrived, I saw a man sitting on a bench outside the cafe. He was wearing a cap and sat with a posture like that my younger brother used. He said hello, I greeted him. But until I heard his voice, I couldn’t be sure even though I’d last seen him only a few weeks before.
Those who meet with me often don’t know what I’m feeling until I start to relax and express myself. I just don’t emotionally react to their faces. Those who are used to me know, ‘that’s just Donna’. They know I’m a ‘whole’ person, that I like people and feel for them. It’s kind of a good thing to have because the judgmental people tend not to stick around. They decide I’m unfriendly or have snubbed them because I failed to react or was selfish because I came to life only after expressing myself and not upon seeing them. So in a way, they don’t give me a lot of chance and that’s probably not a bad thing after all. Those who take the time to get used to me learn I’m as friendly and interested in people as anyone else (within the limitations of other processing issues).
In my twenties, my ex-shrink watched me playing with an object on a shelf. After exploring it, tapping it and waggling it about I declared ‘its a baby bottle’.
‘You’re agnosic !’ declared the shrink.
‘What does that mean?’, I asked.
‘It means you don’t know what you see’, she replied.
Of course I did. I know my own salt shaker, the cups, the teabags. I just know them by where they are. If they are somewhere else I may not know what they are at all until I move them, tap them, smell them. I now see them as a whole, but its too late for my brain to easily work with visual meaning.
A young boy was in a shop and the owner was getting annoyed because the boy was moving and tapping and smelling the objects. He was meaning blind. The owner felt he was lacking discipline and should look and not touch. Perhaps he would have said the same to the parent of a blind child.
A famous woman with Asperger’s Syndrome, Temple Grandin, has stated ‘autistics think in pictures’ and gone so far as to say all animals do too (featuring in documentaries as ‘The Woman Who Thinks Like A Cow’). Yet we’re not all in some nice tidy neat little category of people with a shared diagnosis of ‘being on the autistic spectrum’.
The meaning blind, autistic and non-autistic alike, may not think in pictures. Their world may be made of emotional responses, movement, textures, smells and the acoustics made when tapping things. She has portrayed those who don’t think in pictures, as thinking in words. But had she experienced my thoughts, seen my dreams she’d find neither. They are mosaics, full of feeling and movement and vague impressionist experiences. They have no words and the communication is simply sensed, known. My dreams are the dreams of a blind woman with seeing eyes. Can someone who can see fluently with meaning imagine the world of someone who cannot? Perhaps no more than the hearing can imagine the world of the deaf. Yet I am also diagnosed autistic, part of the wide diversity of that world, yet sharing in common experiences with the wider world of moments of face blindeness.
The neighbour now waves and smiles, but adds ‘Donna, it’s Jill’.
Then I wave back.
.
… Donna Williams *)
This is fascinating. Have you ever read Oliver Sacks? (this is a silly question for me to ask, because I think I’ve only read one of his cases, but I know that as a neurologist he has dealt with issues like object recognition.)
Yes, in fact I spoke to Mr Sach’s (yes, Oliver Sachs, I’m not mistaken) a few times, years back in New York, when Nobody Nowhere first came out.
He’s a nice man and, like me, wanted to get to the bottom of sensory-perceptual/neurological challenges. It was nice to talk to someone who seemed to understand my alienation on a range of levels but also my strengths.
One of the strengths of being both relatively meaning deaf and meaning blind is that of being finely tuned to tone and movement. If I was also tone deaf, that would have lost me a very important tool. Some people compensate with smell. I do, to a degree, but I’ll only seek to smell the hair of those I’m really involved with, and yes, its about that recognition because even when I manage to make the logical connection of a name to the visuals, it doesn’t connect experientially till I hear them, see them move, smell them or make physical contact with them (yes, and I don’t touch most people either, probably because I was taught out of the safety of that).
And then you have people who have no sense of smell, which can happen with a zinc deficiency, so if they were also meaning deaf and meaning blind, that would be a big loss to them.
Anyway, the point is that there’s many combinations and they can result in strengths and these sensory-perceptual/cognitive/neurological differences cover humankind, not just the autistic spectrum, so claiming people with autism are ‘ND’ (neurodiverse) and those without an autism spectrum condition are all ‘NT’ (neurotypical) is a load of supremist hogwash and the sooner we outgrow this trendy meme the better it will be for a true celebration of diversity and equality. I think Oliver Sachs understood that too. He explored difference but also drew attention to the differences we all had.
🙂 Donna Williams *)
Hi Donna
Tiz lovely to hear you have same issues as my son Dylan. Although 11 and verbal , he can fail to recognise even family members out of context. his school think it strange, but I just accept what is.
I dont try to understand just accept its easier.
Keep writing
Zoe
“Face-blindness” is one of the more difficult problems I have had to live with. Supermarkets are the worst. I still panic when I cannot find my partner, Lin, and have forgotten what she is wearing. I have also often been accused of “cutting people dead” (I hate that expression). In a room full of people I know, it can take me an hour to work out who everyone is, and when they move, I can lose it. I once answered my door to a middle aged stranger who turned out to be my sister. She had forgotten to warn me that she was coming. I read somewhere that this problem may be caused by an imperfect connection between the right and left frontal lobes of the brain. I cannot help feeling that knowing does not help!
Really interesting re neurological integration. I was tested by The Brain Injury Rehab and Development Centre in Chester who found some pretty strange stuff re neurological integration. Suffice to say that in my childhood photos I LOOK meaning blind. But once I got older I began to register processing in at least one eye. Now I have tinted lenses to cut down visual input and allow my brain more time to process what I see and thing is when I take them off it is quickly clear my eyes revert back to only processing one eye at a time. The other just stares. I’ve been told its a very cool party trick. Thing is when an eye is actually processing info it moves over an item, person, room. So you can imagine it is rather odd with one staring eye, but they shift! Sometimes one goes ‘offline’ in its processing, then the other takes over. I also find that if I look away then look back my eyes TRY and process what I see in the first 1-2 seconds then just stare through whatever I’m looking at. So its pretty flat batteries upstairs in the visual processing dept 🙂 Thing is I see just fine, just don’t understand what I see. Hence I look at something for 1-2 secs to try and fathom it, then I touch, tap or move it so it means something because once the visual process goes back off to sleep, what’s left is kinesthetic – through movement, form, other sensory experiences. If I’m with people I either wander off and they have to keep up or if I’m close to them as people then I stick close. I have a generic answer for the door. Either I’m friendly to everyone or treat everyone as a stranger. The one size fits all approach works but it can sure be a worry if you’re smiling at a psychopath or a letch! I think that having unreliable senses means you either never trust life or you give up believing you can guarantee anything and try and bimble your way through it regardless. I had the luxury of learning this was my stuff to handle, the old school of tough love and sink or swim. I’m still sinking and swimming as good as I can. It makes life colorful. Thanks for popping by.
Hello Donna! This is absolutely fascinating. I’m the mother of an 8-yr old autistic child who is totally nonverbal and has been diagnosed with ‘lazy eye’ but I’ve felt it was something else as I’ve seen her LOOK at people so intensely sometimes I think she’s taking Soul Inventory. My biggest question here is where can I get the tinted lenses you speak of so that maybe she can have an easier time of integrating visual information. I feel that she knows how to read and understands everything we say but is sometimes just ‘not there’ and has no real way to convey what she understands. I also want to try FC with her but haven’t yet found resources where I live, newly in Portland, Oregon. But I’ve only just begun to look for them and start to find a community that wants to do something besides CURE or DEFEAT autism.
In fact, I’ve just started a new list for the sharing of information and support for people interested in looking at ‘alternative’ views of autism. I’d be DEEPLY HONORED to have you, and anyone else interested, to join:
http://health.groups.yahoo.com/group/UnderstandingAutism/
I’ve put links to some of your sites in the links section, too.
Thank you, Donna, for sharing yourself so intimately. I am going to look for all of your books and very much look forward to knowing you better.
Namaste,
Satina
Hello Donna,
Interesting about one or the other of your eyes being “offline” and appearing to be in a state of staring. How did the Brain Injury Center test for this? Do you remember the tests that were done? Also, what did they recommend for treatement? And, what did they say about the switching from one eye to the other?
The BIRD centre tested for uninhibited infantile reflexes (I wrote about this in Like Colour To The Blind) and their assessment was that my relationship between brain and body was quartered up with each quarter at a different developmental stage. One quarter had infantile reflexes associated with crawling out of the womb,… so hadn’t progressed properly since pre-natal developmental patterns. Two other quarters had infantile reflexes from early infancy and only one quarter had developed ‘normally’ and had inhibited all the early reflexes necessary to more usual development. Essentially I was told my brain didn’t work in an integrated way. I was shown patterning exercises which I then did for two years.
The stuff about the eyes was picked up by a neurologist researching visual perception who suggested some of this was associated with impaired left-right hemisphere integration. These things are written about more in The Jumbled Jigsaw.
On top of these issues was Scotopic Sensitivity – which I was assessed for by the Irlen Centre and essentially caused visual fragmentation – I wrote about this in Like Colour To The Blind. The other issues is an agnosia issue which may be underpinned by the first two but essentially means a degree of meaning blindness and face blindness. I’ve written about this in Autism; An Inside Out Approach and The Jumbled Jigsaw.
So in all my solutions included dietary changed to improve information processing and reduce toxicity/immune challenges, tinted lenses, patterning program, sensory integration program, cranio sacral therapy and my own system of kinesthetic recognition through tapping, moving, shaking things where visual processing doesn’t link new things to meaning and social-communication strategies to tackle the social-communication issues associated with face blindness – for more info, check The Jumbled Jigsaw.
Hope that’s useful.
🙂 Donna Williams *)
Hi,
About your time using irlen lenses. Just trying to make sense of this.
/With an irlen “diagnostitian” you found that the best irlen lenses were of a particular combination of colors – many colors – but which added up to a kind of deep reddish/rust/or whatever mix into one lens.
/You reported that this particular color combination brought about immense improvements, such as, you ability to see whole faces, to see whole rooms, to be able to deal with a lot of visual stimuli, etc.
/You are quoted by Dr. Steve Edelson, the director of the late Bernard Rimland’s parent organization The Center for the Study of Autism http://www.autism.org:
http://www.autism.org/williams.html
http://www.autism.org/interview/irlen.html
http://www.autism.org/irlen.html
You’re quoted and featured that your irlen lenses were of immense benefit, and you give the specific of how you benefited as noted above.
/You were also a great supporter of irlen company.
/At some point you decided agains using your rustish color irlen lenses, and decided against supporting the company.
/You then chose the BPI company Brain Power Inc in Florida. You explain why you chose them on your website donnawilliams.net, and I understand that. My questions, however, are below:
/In contrast to irlen, BPI offers a standard set of lenses for autism – I believe 7-10 of them or so. Many of them are of only one color, some of them are of slight mixtures of a few colors. Irlen clinicans use about 10-12 single colors, but they only start with these … they combine them in a layering system to see if any combinations are of benefit. The combinations can be in the hundreds, and they work with the client to find which combination if any is helpful. Your rustish color was a combination of many colors, I believe, perhaps 4-7 colors (?) Anyway, the major point of both BPI and Irlen is that there is a very specific color/color combination for each person. Your Irlen lenses are extremely different than any of the BPI lenses. And, you say that you use many of the different BPI lenses at different times — sometimes the Green, sometimes Blue, sometimes the clear UV lens, sometimes the Sahara (light brown). [I.] Why would you give up your Irlen lenses if they were so helpful?
[2.] How could the BPI lenses help being so different than the Irlen lenses you used.
[3.] Do you still have the experience of seeing whole faces, etc, with the BPI lenses?
[4.] How can such a wide assortment of different BPI colors help?
[5.] How do you decide on any particular day which BPI lens you will use?
Thank you very very much for your time.
Hi there,
1) Steve Edelson has quoted what already contains a few misquotes by the Irlen people. Mostly what’s quoted is correct, but some parts are not.
in fact my last set of Irlen lenses were peach colored.
2) Irlen lenses are COSMETIC… meaning one must find the right combination of cosmetic colors which finally combine to block the particular light frequencies that reduce the visual perceptual fragmentation challenges for each person. Irlen was founded by an Educational psychologist who BEHAVIORALLY found that color worked for some people with a particular visual perceptual disorder.
3) BPI lenses are not cosmetic… they are made by Opthamologists – practitioners in visual perceptual disorders. The BPI lenses are made to very specific LIGHT FREQUENCIES… hence they don’t need to experiment with 100s of colors till they find what works. They’ve extensively researched the use of their lenses with the autistic population and found only a limited range were found to be of benefit.
4) I chose the BPI over my existing Irlen lenses as the BPI pair at the time worked better for me than the Irlen ones… The Irlen ones STILL worked for me, just not so well. Also, I had had several color changes with Irlen, and similarly, at different times, different BPI ones worked best for me. This is apparently pretty usual with people with metabolic/immune challenges which alter information processing.
I do see whole faces with the BPI lenses, but I’m still mostly face blind. This is because even now I see the face as a whole with the lenses, I struggle to RECOGNISE faces when out of context… even those I know quite well. I’m adapted to recognising people by movement, by voice, by hair and clothes. After adulthood, even if visual cohesion is restored, cognitively one has developed a different system.
5) not all the BPI lenses work for me. 4 of them work for me, the others don’t. But I used the BPI lenses for many years to allow people to self test and most found at least 1-3 BPI lenses worked for them.
6) I don’t decide day to day, not at all. If I’m feeling ill, like after the flu, vision is more fragmented so I’ll use another set that would normally be a bit too dark for me for every day use. Same if my salicylate levels are very high I find I need a darker set. And in bright sunlight or under fluorescent lights… otherwise the one pair are just fine for me every day.
I’m assuming you have read Like Colour To The Blind where I first wrote of Scotopic Sensitivity Syndrome.
🙂 Donna *)
Thanks very much for explaining.
About when your “vision is more fragmented”, could you describe what happens? What do you see?
Could compare this to when your vision is not fragmented? What is the difference?
Your vision is not always fragmented? If not, how much of the time is it and how much of the time is it not?
Related, when your vision is fragmented does it affect your social functioning, and if so, how?
Thanks again very very much for your time.
I wrote extensively about visual perceptual challenges in Like Colour To The Blind. The UK publisher, Jessica Kingsley Publishers, http://www.jkp.com sells this book and you can probably get it from libraries. I wouldn’t do it justice to try and capture what took a book to tell about in a few sentences.
fragmented vision means seeing in bits, losing the cohesion of the whole… think mosaics, pixels, tunnel vision… but unlike tunnel vision the rest CAN be seen, just its not processed, understood, in the context of the part.
I wrote of object blindness, meaning blindness, context blindness is both Like Colour To The Blind and in The Jumbled Jigsaw, also in Autism; An Inside Out Approach. So you can find more info in any of those.
People with these visual perceptual issues struggle to learn facial expression, body language, often struggle to read for pleasure or read at all but many scan-read, it effects depth perception, using stairs, handling proximity and touch, coping with visual changes in the environment, sensory reactions to fluorescent lights etc, but like blind people can adapt to function in a sighted world, so can those with even severe visual perceptual differences. A blind person can sit facing you and you may not even know they are blind. Those with visual perceptual disorders can still learn to copy the patterns around them and try and blend in but this disables them from using the strategies that work best for them.
🙂 Donna Williams
http://www.donnawilliams.net
Do you have prescription glasses? If so, do you wear them? If not, why not?
If you close your eyes or cover them with something, for a while, is your functioning improved (social functioning, communication ability, ability to listen, think, etc)?
I have a language processing problem so I need to see gestures and the use of representational objects or sketches of connection to track conversation with much interpretive depth/fluency.
otherwise, going without vision would certainly make things easier.
I’m certainly more physical when not processing what I see.
I certainly think better through the use of objects/gesture or when staring through visuals till I can’t be distracted by them.
conversing is much harder when focused on a face… faces are very moving, distracting things, language is easier when focused on objects.
This is all expanded upon in The Jumbled Jigsaw and in Autism; An Inside Out Approach.
🙂 Donna Williams
http://www.donnawilliams.net
(I wish I could afford your books – I know they are reasonably priced but I can’t afford them unfortunately. But I’ve read quite a lot from your website — many of your articles, essays, poetry, and of course your blog articles etc. I know you’ve written about a lot of the things I’m asking about, so sorry to ask again. Although, in some ways I think it helps to clarify certain things).
Anyway-
1/ Do you now see whole objects all of the time? Or, only for a short period of time each day? Or, is it rather that you do, on and off throughout the day, say 10mins on 10mins off, or something like that?
2/ Just to ask again, how has the ability to see whole objects improved your social functioning, and in what ways? For example, can you have better quality and amount of eye contact, etc?
When was it that you first observed that the world (your visual world, etc) was fragmented?
When was it that you first observed your various other sensory difficulties — the sensory integration difficulties you discuss. When did you first observe this?
When was it that you experienced a non-fragmented world and better sensory integration?
Above you mentioned that you now see whole faces? Again, is this the case all of the time?
Could you tell me about what faces looked like before you could see them as wholes? What would you see? Just one part, and if so, which part?
Do you ever experience staring at someone face/eyes? Intense, persistent staring that is not under your control. Little thought occurs when this happens … just staring blankly. If this happens with you, can you describe what you observe when it happens — what do you see of the person’s face? How do others react to you when this happens?
Have you experienced yourself at a level that is close to “ideal” or “normal”?
Are you at this level now?
Are you at the highest level you think you’re capable of?
If not, what would you like to improve on?
What is your social life like … how much of the day do you socialize (with people in person)? How do things go socially? Good conversations, long conversations?
My books can be borrowed for no charge from public libraries, including Like Colour To The Blind where you can read in depth about the things you are asking so intensively for answers on.
I tend not to socialise and I don’t converse for fun, only purpose.
I keep conversing brief, tend more to characterisations than conversing, prefer typing to speaking. I like people but prefer to observe them than interact with them.
We’re all different.
Beyond that this is becoming a mammoth interview and whilst I don’t mind people’s interest in my blogs, I don’t expect to write an only book here or end up in a surreal endless interview pattern.
if you visit http://www.donnawilliams.net you’ll find I’m very creative in many other areas and blogging is just one small part of that.
… Donna *)
When did you first realize that your vision/perception was fragmented?
Did anyone else, such as any doctors or others, help you with your understanding of your perception as being fragmented? Or was this something you described on your own?
How did you think of the terms:
fragmented
object blindness,
meaning blindness,
context blindness
kinesthetic
sensory perception
These seem like very specific terms used in medicine, rather than ordinary terms used by non-medical people.
I see you refer people to your books, however I do not have them, nor does my local library, nor can I afford them unfortunately.
My books CAN be ordered in by libraries.
They simple check the system, find which libraries do have them, then order them in.
Libraries can also often purchase new books, if those books are requested.
This is how many of my books are in libraries.
Autism societies also often have libraries and many have my books in them.
You can read about my visual perceptual issues being misdiagnosed as sight (eye) problems in my books.
The specialists in visual perceptual disorders explained my issues to me in my 20s.
The word fragmented is an adjective, in all dictionaries, so is blindness.
Meaning blindness is merely two words, stuck together to qualify that whilst not blind, I am often blind to meaning.
Object blind simply means the recognition of objects with meaning is a problem.
Context blind is merely a qualification of a form of meaning blindness where the object is processed as a whole but the processing of its context is lost.
I’m very well known for creating my own compounds.
I grew up with idiosyncratic language in words and gestures.
Its natural for me and is throughout my books.
Kinesthetic and sensory perception are words I have got from teaching – I became a qualified teacher – and from social psychology – which I did a year of when returning to education.
I am not a press button interview
I’m not a data-output machine
It’s Christmas
There’s a human being in here.
You have said nothing of yourself
this is very clinical
its like talking to a machine.
What a lot of strange comments. In your books I read myself. I have trouble sometimes in following what I read — especially instructions — but your books are OK. Instruction manuals in “user friendly chatty mode” are impossible. I cannot hold what they are saying. This seems similar to not following facial signals. When trying to work out how my mobile phone worked, i went into the Vodaphone shop and explained that I was autistic and had some comprehension problems following the instructions. The assistant obviouslly thought I was dumb and I was tempted to tell her that I had an IQ of 150, but swallowed the desire, as I usually do!!! I am meaning-blind to long strings of words. That is it. That is all. Facial recognition, facial expression, body language and this strange chatty way of explaining the world and its contents seem linked and equally incomprehensible. It frustrates me that this cannot be explained to “normal” people. I am not and will not be ashamed of being autistic. It has taken me a long time to get here.
My partner says Christmas is just another day, so have a happy another day.
Hi Bill,
at least you sound pretty human, you talk to me like human to human, not like someone studying an insect.
you’re right, Christmas is just another day for many of us (I celebrate community and the summer season – my version of Christmas here in sunny Australia).
Yes, the meaning deafness is a similar challenge on the auditory channel and good for you self advocating, shame folks need instruction to get what you’re self advocating about, but nevertheless at least they tried. Mobile phones do my head in… just press things till something happens…. eeek, much technology is not autie-friendly.
Yes, you like me, have learned we have an equal and capable place in this world, just like those who are deaf-blind, only our challenges are perceptual (how the brain processes what the eyes see, ears hear) rather than sensory (problem with the functioning of eyes and ears themselves).
It’s amazing to meet some seriously meaning deaf and sometimes meaning deaf/meaning blind people and find that some through the wildest determination, insistance on equality, naturally autonomous natures and using strategies they’ve found work for them in navigating the world, have actually done fairly well.
thing is, most of us aren’t taught nor have modelled the strategies which might work for these things.
🙂 Donna Williams *)
http://www.donnawilliams.net
Please don’t refer to me as a machine. Some people with autism are like this, and please don’t condem me for it.
Thank you for your reply, and for noting:
“The specialists in visual perceptual disorders explained my issues to me in my 20s.”
With regard to all of the perceptual discussion your provide (and which I’ve been asking about above) please tell me what you have added to autism study that hasn’t been discussed in science/medicine.
Are all of your language and ideas about perception adopted from the specialists in visual perceptual disorders? If not, what specifically have you added.
I wanted to note that the well known and celebrated autistic young adult Tito appeas to have almost entirely adopted your ideas. His language, terms, ideas, descriptions, are essentially exactly as what you describe, and often his phrases are essentially the same as yours. A friend of mine wrote him and he wrote back that he’s read many of your books and love them … but he didn’t answer the question of whether he is using your ideas/descriptions etc.
I think it is very very important to provide the exact sources for one’s ideas.
Tito is most welcome to refer to my ideas or express himself as he will.
He’s a remarkable young man.
I’m not a pedant and I don’t scour every scientific document on the planet so see how remarkable, original, whatever I may/may not be.
I’m a human being, not someone who lives, breathes pure academia.
As for the merits or otherwise of my work, that is for no single human being to judge on behalf of a world of millions who have read my works (and you have not).
It is for each human being who HAS read my books (including those who bought second hand copies for $1, those who borrowed them for free, those who had a library get them in) to decide in their own OPINION for whatever reasons, good or bad that that may be, and come to their OWN views knowing these are ONLY their own views and that human beings are SO diverse that their opinion, like mine, like that of any one of us, cannot possibly represent any objective truth on behalf of all.
I have been called many things, many I have not liked.
I was often as doll-like or cartoon-like as you have come across as machine-like.
I would, however, not object to how others experience me, for it is THEIR experience and that is THEIR freedom to have that without ME assuming some self righteous assumption I have the right to control their perceptual reality.
I’m a Taoist, perhaps that may help you understand.
If in doubt, perhaps look up the term.
A Taoist is, perhaps, as far removed from a pedantic purist as one can be.
… Donna *)
You wrote: “I was often as doll-like or cartoon-like as you have come across as machine-like.”
Did you see my comment above (3rd post above) about this? I wrote “Please don’t refer to me as a machine [or machine-like]. Some people with autism are like this, and please don’t condem me for it. “
(in case you skip it, please see my last post above).
The reason I’m asking these questions is not personal in any way. I’m simply trying to understand the history of ideas in autism. You are often considered an important person in the history of autism, and I fully understand one way that you are, but don’t understand the other way.
The way that I do understand is your really interesting and insightful discussion into what it is like living with autism — (of course, not what it is like for everyone, but your stories have helped many, including those with autism and autism specialists.
What I’m not clear on is whether your scientific/medical descriptions have benefited science, or whether what you describe has already been discussed in science before you, and you are simply utilizing it, that is, applying it to your life, which is fine. (Again you did write above that “The specialists in visual perceptual disorders explained my issues to me in my 20s.â€)
I will say that many people seem to think that your scientific/medical discussion is your own — that you conceived of the core ideas that you use. You have now clarified this, it seems, and I think it is very important for those in science and medicine to fully know that you benefited from the specialists you worked with, their ideas and descriptions.
Regarding my comment on Tito, and your reply: “Tito is most welcome to refer to my ideas or express himself as he will.” My point was, simply, that it is very important for him (and anyone) to credit the people whose ideas they use. Tito has not done this, nor has his mother Soma, who was a major part of his public presentations of his ideas, and a major source of his learning and teaching. Again, Tito’s language is essentially plagarizing of you, and this is, actually, not ok, because he never credits you, rather, he and his mother lead others to believe they are, all, his own ideas.
These issues are very basic in academics. Very simple and basic.
I’m not judging you. I’m trying to come to a understanding about something very basic: the origin of these ideas/descriptions.
a recognition of how I’m EXPERIENCING your dialogue is not a condemnation.
You may be PERCEIVING it that way, but to me its merely an accurate adjective/noun description of how I’m experiencing an interrogating, impersonal dialogue with someone who has asked the most finite and intimate details of my human life but given no single details of their own human life.
no more, no less.
if I don’t wish to be doll-like or cartoon-like, I can either come to terms with my own nature and learn to like it and accept it or take progressive steps to become something I like better.
.. Donna *)
I just read the second part of your posting.
your tone has shifted to a less interrogative tone, its more person to person.
thank you.
regarding terms, these come from experiences and struggling to help ignorant people understand the experiences. My terms evolved from far more Donna-speak versions to those more closely resembling existing terms in the English dictionary.
Yes, I am a living human being which means I have influences, like any human being. But these include less expected influences, music, songs, TV, advertisements, strangers, ignorant and challenged people, kind people, professionals and street people.
It is folly to imagine that only academics and professionals are the source of all useful influences or comprehensible terms.
As for whether people fail to cite me, so be it. My books have published dates, my lectures have dates, my experiences and the dialogues in them have dates.
I’m happier to be a screenwriter, artist, composer, human being, that get wound up about who uses terms I may have come up with and whether they ‘credit’ me… in my world the fact my terms are USEFUL enough to be used by others to describe similar experiences is a great credit to me as a human being. If people profit from that, what does that matter to me in my every day life? I live in the moment managing simple tasks chaotically with as much grace as I can, so whilst these things matter in your world, they aren’t very important in mine.
I love polar bears. They are eating each other and drowning because we are melting the ice that is their land and we are doing it to run air con and Christmas lights and drive Humvees in cities to take obese children to school around the corner in case a stranger might say hello to them.
I watch droughts dry land that once sustained animals and people and futile wars that kill for reasons I find petty. I watch children abused through a parents’ endangering co-dependency where ownership is more important than the hard work of caring enough to protect them. I watch people walk by injured strangers because they are not biologically related to them. I watch families isolated and scorned in communities which have grown up in comfortable segregation from disability. I watch indigenous people be ignored in a nation long overdue to say sorry.
what do I care of credit when there are so many things to care about which are far more immediate, things many find merely invisible. I don’t care much about credit because seeking to stay happy and positive when one sees the world through their heart isn’t easy so I work hard to see the positive every day.
but these are the questions you did not ask me, the person you didn’t address, someone more and deeper than a collection of sensory perceptual or cognitive differences, someone more than a ‘famous name’.
…. Donna Williams
I’m not from an academic background.
Getting a high school education, let alone a university one was rare from my background.
So even though I became university educated (after years in ‘unskilled labour’) I guess my heart and mind are not those of an academic.
I’m far more a spiritual person, a feeler, not a thinker, a sensate, not an intellectual, very much more comfortable being a ‘dag’, a ‘fool’ and never certain anything I say is of any exceptional value.
So its hard for me to care deeply from the perspective that you have so much passion about.
We all express passion differently.
Knowing people with anhedonia (found that word in wikipedia) and extreme apathy (got this word from the dictionary) , I have learned I am very lucky to have passion even if passion isn’t always easy.
🙂 Donna Williams *)
Ok, I understand. I’ve tried many times asking simple but important questions. They are poignant, important questions, and are very simple, and put simply. They are exacting questions, and they are penetrating. They challenge you — they are hard questions. I’m trying to get some core answers. But your, now I see, unwilling to take part in this discussion. So I’ll stop now with that.
Last thing. Ok so you’re experiencing me as an “interrogating, impersonal dialogue” “with someone who has asked the most finite and intimate details of my human life.” First, these questions are extremely simple, and are not about anything intimate. Secondly, why wouldn’t you have more respect for me … instead you have to tell me what you’re experiencing me as … this is the same as calling me an “interrogating, impersonal” … there is little difference. For example, say there is a nasty person and I say to he/she that I’m experiencing him/her as a nasty person. This is the same as calling he/she ‘nasty’. Some with autism are machine-like, especially when it comes to writing (which often is quite impersonal anyway due to being voiceless and faceless words on a page/screen). Some with autism are far worse off than you and this is how we conduct our discussion to the best of our ability. Actually, in my defense, much discussion in academics is just like this. It’s poignant, acute, and no time and language is wasted on irrelevant narrative. We work had to get to the core questions.
The reason I’ve asked some of these questions is that I’ve been baffled by where you, Temple Grandin, Tito, and others, get their ideas/language/descriptions. It’s like your and Grandin discussion is essentially the same (with the exception of some differences (i.e. the issue of thinking in pictures, which actually is not that relevant for what I’m asking about). You, Tito, Grandin, and much of the discussion among clinicians regarding sense perception seems essentially the same. I’m, SIMPLY, trying to ascertain the history of these ideas. WHO conceived of them and how and when? Are the adult autistic authors simply using some historical ideas in their descriptions of their sense perception symptoms?
SORRY, I didn’t see your above posts before I wrote this. I just read a bit of it. DARN. Sorry.
saying how I EXPERIENCE something does not make it objective FACT
it also allows me to say what BEHAVIOUR I find uncomfortable without judging the PERSON as the SUM TOTAL of that behaviour
in other words, it allows for the person to retain their worth as a person.
they have the freedom at all times to cast off as ‘subjective’ the way any person experiences their behaviour.
As for history of ideas, feel free to research and write a book on it.
could be interesting and you have good interrogation skills!
But one tip, when you give of yourself as a person, it tends to make others feel more at ease to give of themselves in response.
🙂
“But one tip, when you give of yourself as a person, it tends to make others feel more at ease to give of themselves in response.”
I’m nothing.
can you delete that — my emotions got the best of me.
we are all something.
ALL of us.
Donna,
I experienced the following as well.
You wrote http://www.donnawilliams.net/notthinkinginpics.0.html
“The cat was a leg, an ear, a tail, an experience of pattability and a noise with associated movement, but no whole cat.”
When did you first realize you were not seeing the whole cat? (This question is of course not specific to a cat. It’s a question about perceiving parts vs the whole, and I ask about the cat because this is what you wrote about).
You mention “but no whole cat” … how then were you able to know it was a cat, or, did you not know?
In childhood, is this when you experienced this? And then later in adulthood you realized what was happening as a child?
Do you still experience objects (cats or whatever) in this way, at times?
press button
three apples
press button
three bells
press button….
ad nauseaum
the answers you’re looking for is in Like Colour To The Blind
and yes, you can loan it for free from libraries and have them order it in for you.
press button
three oranges
tinted lenses, omega 3s, glutamine, low salicylate diet, treatment for immune deficiencies… feel free to read up if you dare spend your time.
press button
three monkeys
press button
press button
Zoa, Chris and Not Sure…. you folks sure do live in the same space
press button
ping, ping, ping
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