Thursday, June 02, 2011

For Nisha of South Africa, clean water for all means all!

On the 28th May 2011, I was surfing on the #cerebralpalsy hashtag of Twitter when I caught Nisha of South Africa's eye. I was very impressed with her 360-degree commitment to turn things around for herself and for the world. Clean water is one of the planet's biggest needs. As of the 2nd June 2011, she is 59% on the way to her campaign goal of $6500, with nine months to go. (The campaign was anticipated to take two years).

I leave you now to allow Nisha to tell her story:

WHO I AM
1st August 2010
My name is Nisha, I am a twenty-year-old from South Africa and this is the story of how I became who I am. WARNING: My life has more twists in it than a rollercoaster.

At six months I was diagnosed with Cerebral Palsy (CP) - an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement. As a result of having Cerebral Palsy I am unable to walk and my right-arm has reduced functionality. Growing up I used to watch other kids playing on the playground I used to be so envious and as I grew so did my anger towards God.

When I was 13 I was diagnosed with advanced Scoliosis – a medical condition in which a person’s spine is curved from side to side – and within weeks I was on the operating table undergoing surgery in which a metal rod was placed between my vertebrae to keep them from fusing together and was subsequently bedridden for a year after that. As you can imagine being bedridden wasn’t exactly fun - I got into a mini-depression and put on a bit of weight – until a family friend of ours – who is now passed on God bless his heart – came to visit and told me I looked a little ‘plumpy’ – at first I was really hurt and then I took a good look in the mirror and realized that there might have been some truth in what he was saying and I made some changes in my life.

The year flew by in the blink of an eye and it was time for me to go back to school. I went for about a week before I realized that my body was never going to be as it was before the surgery – just sitting in class for eight hours was difficult – so my parents pulled me out of the public school system and made alternative arrangements.

At that point in my life everything was going according to plan school was going great and everybody was healthy and ‘happy’ but, I still felt as though something was missing – like everything in my life was mediocre. I had no clue what I wanted but, I did know that I did not want to lead a mediocre life. A few weeks after I had had this profound realization I was watching The Oprah Winfrey Show – as I always did – but this particular episode featured a young woman by the name of Kendall Ciesemier -one day after watching an Oprah Winfrey special: on the AIDS epidemic in Africa she took all the money that she had, put it in and envelope and sent to WorldVision to ‘adopt’ an orphan and in 2007 Kendall founded an organization called Kids Caring 4 Kids – an organization which aims to raise awareness and money for AIDS orphans and other highly venerable kids in Africa and to inspire kids to care for others in need. My mouth literally fell open when I heard Kendall’s story but, after watching the show I switched off the TV and went on with my normal life convinced that I could never do something so spectacular.

A few weeks later, I found myself laying on my bed crying because my back was hurting and all my muscles were stiff I remember asking God: Do you love me? Do you hate me? Do you even know I exist? Why me? A gentle voice replied: Why not you? That was like a slap in the face because I always thought that God had it in for me and that response made me realize that the world didn’t revolve around me. I paused for a moment before I asked: Why am I here? The gentle voice again replied: To show the world that anybody can make a difference and change the world. I remember thinking to myself: I can’t even go the bathroom by myself how in the hell does he expect me to change the worldand then as if on cue I had a flashback to Kendall’s story and what Oprah said to one of her other guest’s once Kendall left the stage: Kendall is proof of what people can do from their hospital beds even – Kendall had just undergone a liver transplant and she asked her visitors to ‘adopt’ an orphan instead of bringing her flowers and candy. Watching that show and hearing Kendall’s story taught me that to change your reality all you have to do is shift your perception and that is something I will carry with me for the rest of my life.

A few months later I tried to raise $1 000 for a well -known organization called UNICEF - long story short I only raised $5 for the most part because I was naive an didn’t know what the hell I was doing. However, that experience did teach me what not to do and on March 5th 2010 I started my Clean Water for All Campaign. The objectives of the campaign are as follows:

  • To raise $6 500 for The Water Project, Inc – an organization that provides clean water to communities all over the world who suffer needlessly without it – by March 5th 2012 and build a well somewhere in the world.
  • To highlight the plight of those who don’t have easy access to clean water.
  • To prove to the world that anybody can make a difference and change the world – even me: a twenty-year-old girl in a wheelchair.

Log onto http://www.firstgiving.com/nishavarghese, make a contribution to my Clean Water for All Campaign and be the change you want to see. I’ve raised $3 855.85 so far :)

And I hope you have a watery day, with outflows of one kind or another.

Hope you find it within you to support Nisha's campaign. She is spiky, ambitious and a change agent!

Saturday, June 19, 2010

[Helen Keller Mythbusting Blogswarm] "Where do I live again?" Orientation

Some time ago I discussed with a fellow blogger about Accessibility and Universal Design.

This happens to be a big focus on the Second Life Helen Keller Mythbusting Day, from which it has sprung. Last week (the 11th June 2010) Anna of FWD/Feminists with Disabilities thought that a blogswarm might be the way to go.

The American Foundation for the Blind's Helen Selsdon wrote about her visit to Helen Keller's first home, Ivy Green.

Shortly after Anne Sullivan became Helen Keller's instruction, she felt it instructive to do some mythbusting, as we would now call it.

When she and Helen moved into the first house, she created an environment which was focused on learning: both academic and social.

On the 11th March 1887, Sullivan wrote a letter to Sophia Hopkins, her own mentor and housemother at Perkins.

Sullivan would say later: "Crocheting and sewing are arts of the devil".

Here is the section of the letter describing Sullivan's decision - in consultation with Kate Keller - and its consequences:

"I had a good, frank talk with Mrs. Keller, and explained to her how difficult it was going to be to do anything with Helen under the existing circumstances. I told her that in my opinion the child ought to be separated from the family for a few weeks at least–that she must learn to depend on and obey me before I could make any headway. After a long time Mrs. Keller said that she would think the matter over and see what Captain Keller thought of sending Helen away with me. Captain Keller fell in with the scheme most readily and suggested that the little garden-house at the "old place" be got ready for us. He said that Helen might recognize the place, as she had often been there; but she would have no idea of her surroundings, and they could come every day to see that all was going well, with the understanding, of course, that she was to know nothing of their visits. I hurried the preparations for our departure as much as possible, and here we are.

The little house is a genuine bit of paradise. It consists of one large square room with a great fireplace, a spacious bay-window, and a small room where our servant, a little negro boy, sleeps. There is a piazza in front, covered with vines that grow so luxuriantly that you have to part them to see the garden beyond. Our meals are brought from the house, and we usually eat on the piazza. The little negro boy takes care of the fire when we need one; so I can give my whole attention to Helen. " (Sullivan 1887)
The new arrangement would seem to have satisified both Keller and Sullivan's needs. It was their first experience of living together as teacher and student, and the first time Keller was separated from her family.

There are probably a lot of myths about this. The way I was introduced to it was some time back in 1989, when I first read Margaret Davidson's HELEN KELLER'S TEACHER. There are reconstructed conversations (I don't know how accurate they are or were, or how far they were constructed to tell the story to the readers) in which Helen is referred to as a "tin god".

The myth this may or may not be alluded to is that people with disabilities might make their families into slaves: something particularly relevant given Keller's Southern childhood. The "negro boy" is Percy, and he, like Martha Washington, was one of Keller's acquaintances.

Joseph P Lash (HELEN AND TEACHER: 1980) said: "It is doubtful how aware Helen was at the time [the mid-1880s, some years before Sullivan came] of these clashes.

One big Helen Keller myth I would like to deal with is the nature and extent of her wildness and how much that may or may not have been tempered by language and communication.

Even John Macy fell for it, when he said Keller was "the lucky victim, fortunately, of the good phrase". And he himself a writer. Many of his conclusions post-hoc in regard to Keller's style in general...

As a journalist and activist, Keller made the written word her home. After she went to Radcliffe College, and while she was writing her autobiography, she worked from home, whether that was Wrentham in New York; Forest Hills several years later; and her last home Arcan Ridge. Arcan Ridge was burnt down, and that was a loss to the archives.

Equally as structured as the indoors was the outdoors. There were, for instance, walks made by smell - through the flowers - and there were many statues to enjoy.

One of the big myths - and a feature of many jokes - is the one about moving the furniture, and Keller would not know where she was.

At the start of 2010, I finally read a book I had wanted to read for a very long time (since I discovered it in December 1997): Deaf-Blind Infants and Children: a developmental guide.

There are several books about independence, and also there are blogs. One is Pipecleaner Dreams. Ashley, a woman in her mid-teens, contributes a great deal to her household. She first became well-known for her pipecleaner creations. Over the years, her mother has done a great deal to make the house accessible to all its members. Another blog I have read is A Place among the Stones, the writing of a Dutch woman who is deaf-blind.

One of the most interesting points of Keller's life was also in her teens. When I read Lash's biography for the first time in 1995, many of her diaries struck out, especially in the chapter My Teacher, My Self and the ones afterwards.

Lash talks about how she melded with her times - which was the end of the Victorian era (1837-1901).

Someone said and I paraphrase: "She is just 16, and this is a sweet time in her life. Now is not the time to push her into serious academic work..."

Keller's social conscience is one of the features of her life, and was very active.

Coverage of it through the years has created various mythic imports.

For instance, that she was pushed into it by Sullivan or Macy.

It is probably as important to talk about the failures as much as the successes.

In the 1890s, Ida Chamberlain suggested to Keller that they and several of her benefactors create a school for the deaf-blind and train people as much as Annie Sullivan was trained, with similar techniques.

This may or may not have been encouraged by Anagnos, who had an ambigious position in Keller and Sullivan's lives. Again, HELEN AND TEACHER has some information. The second chapter, in particular, is titled BOSTON, PERKINS AND SAMUEL GRIDLEY HOWE. Anagnos' early life and motivations are described, personally and professionally.

One important thing that Howe did and Anagnos continued was to try to make books accessible to the blind.

Some fifty years later, when Miguel tried to make talking books, Keller opposed it. Some people think that was because she could not enjoy them herself without assistance.

Many times while Keller was studying and before she became famous, she would have trouble trying to get important texts, especially the ones with mathematics and science, and other not very common books.

A Keller house would often be a library.

One of her poems explicitly talks about the built environment. "Song of the Stone Wall" is an experimental poem which combines influences from literature and legend with her observations. It is an emotionally moving poem.

Macy said: "The greater the medium the greater the writing".

One of my favourite stories of Keller reading is probably the one about water.

One of the books she really loved when she was coming into her teenage years was Frances Hodgson Burnett's LITTLE LORD FAUNTERLOY, which I am reading just now.

By the time of MIDSTREAM, Keller was a traveller. Some of the trips I remember reading about were to Japan, Australia, South Africa and Israel. In South Africa it was said, "You have aroused the conscience of many".

One instance in which Keller's conscience was aroused was when some Israeli people wanted to make a special village.

The issues of separatism versus inclusion are widely argued today.

In Keller's last years - well into her 80s - she wanted to have fun. Over time, her household companions had changed. One of them was Katherine Corbally, who talked about how Keller liked hotdogs.

A biographical friend was Nella Braddy Henney. Many of her observations were reported in The Dupe of Words, the HELEN AND TEACHER chapter which perhaps has had a lot of impact on my thinking. It covers issues which were brought up in discussion of THE WORLD I LIVE IN (I have read one extract of that book, and it is THE SEEING HAND), of how Keller described her world, especially concepts like "horse" and "pink".

Several other books talked about this too, especially the ones by Thomas Cutsforth and Pierre Villey-Desmerets.

One of the first books which did some myth-busting was probably Selma Fraiberg's INSIGHTS FROM THE BLIND.

One of the basic concepts of home is having a place and a space which is yours, and which you are able to share with others.

Home can be on the margins or the centre of a life.

Friday, April 16, 2010

[SocialVibe] Mom Sends Adopted Child Back to Russia

Mom Sends Adopted Child Back to Russia

Thank you, SocialVibe, for this socially-oriented coverage of the Artem Saveliev (Artem Justin Hansen) story.

When first I heard of it early on the 10th April 2010, it was a shocking story.

I have written a little piece of it in my essay-book Attachment with an Accent (the link I have given you here is the Scribd version).

This is the version with [some of] the links which you will find on page 9. I realise that the country table is incomplete.

For once, I have found, Zoho Writer is more loyal to the original fonts than Scribd is. I think in part it's because I used Word as opposed to InDesign.

* * *

The charity I am supporting through SocialVibe is called The Vision Charity.

More about it in due course.

Several people on the Web are supporting different charities.

Tuesday, May 16, 2006

Autism and Awareness in Europe: the paper in full

Hello everybody!

It's Autism Awareness Week from the 14th to the 20th May 2006.

Introduction and Prologue: self-insertion in action research

To begin: When people ask me "How do you know about autism/how did you learn about it?"
I answer: "By being in an Anglophone country, culture and environment - within a developed country."
There is a diverge in interest and awareness in many European countries even now.
We have a supranational organisation called Autisme Europe which is part of the World Autism Organisation.
There are many disagreements on diagnosis, incidence/prelevance, treatment and outcomes.

Explorations in autism awareness in print and on the net: my personal experience

In March 2002 I became embroiled in a discussion on the Chalet School forum.

One of the members had revealed Munchhausen's by Internet in her interactions through instant messenger through another member.

We then set to talking.

I think this post here will set us straight about autism awareness in the developed versus the majority world.

My young friend was born in 1986, which sets us at the beginning of our survey of autism awareness around the world and the efforts towards it. She lives in North India and is currently studying in Dehli for a BA in English literature.

I hope she and some of her friends will come here!

"I would think so [addressed to a woman who has an autistic grandson]. I WAS slightly more tolerant because I know in India many people still think of people who have neurological/brain problems as possessed by the Devil or at least their lives not worth livng. I am also aware that I have had access to information because I am in a developed country. Those good folks at Willesden Lane, now City Road, provide a service par excellence (and of course those pin people, over which you cannot escape if you are ever to visit a psychologist's office-give an ESL student anything with pictures and she will devour it without meaning to). Things are not quite the same in India. I realise this because I read the Action for Autism magazines on the Internet and the prejudices and the attitudes are widely talked over in the magazines (Network). Lots of the research is very American-centric. That's why I cheer when I see a good European, like Paul Trehin, or an Australian.

Donna Williams in Nobody Nowhere has said: "While it may look like it, autism is not a form of madness [and this after 20 years of being called mad and stupid and various other derogatory names]. In fact, it's something of an extreme example of a mechanism in action which prevents it."

[I redirect the conversation to my friend in North India]: I had a very good think about it, how I came to know. In 1992 I had become very interested in mental illness, and my third-form teacher recommended my mother read Donna Williams' Nobody Nowhere, by giving her an article. I had hurt my hand when some sixth-formers hit me with a ball and cracked a ligament or something. It was such a fascinating and interesting and inspiring story that I begged her to get it two months later. At this time my grandmother was in hospital for a gall bladder and I was reading this story called Fighting for Georgie in the Readers Digest. It's an extract from Sound of a Miracle by Annabel Stehli. Between those two I began to build an impression of the disorder and its treatment in the sixties. Both of the books made me quite aware that it was a sensory and neurological condition. I didn't touch them for five years, though.

Then I heard of this author quite by chance, when reading the paper. Her name was Temple Grandin, and she was a PhD in animal science, and was important to Les Murray because he was in the country and also had an autistic son named Alexander. I didn't think I was going to acquire the book so soon. I read the first one, Emergence, and then the second one, Thinking in Pictures. And of course, she will put in an excellent bibliography and enable me to look up some of the actual papers, which turned me on to Oliver Sacks, a great popular neurologist who wrote The Man Who Mistook His Wife for a Hat and also An Anthropologist on Mars (which tells about a visit the author took with Temple Grandin and his reflections), which are stories about all sorts of neurological conditions. Also then I came to know about the autobiographical writings from Francesca G Happe who is part of the Theory of Mind crowd. (Which is also Uta Frith, Arthur Leslie, Simon Baron-Cohen, Sula Wolff, Digby Tantam...) That was David Miedzanik as well.

Speaking of the Theory of Mind crowd: there is a test called the Checklist for Autism in Toddlers, that Simon Baren-Cohen (of Cambridge University) does. A Japanese man reported on this test under the title "Are there psychological markers..." and talked about proto-declarative pointing, joint attention and eye gaze as three important markers. That is a very simple test that any child doctor can do if they want to refer the child/adult concerned to a specialist. There is also the CARS which is more like a rating scale and requires the parent to sit an interview. It goes from 0 to 60 and measures 15 different areas. And there are many many other tests. Some neurological, some psychological, and some others. Lots of them were not around when I was a little girl.

So it's a lot of books, essays, papers, websites and other sources, including just talking to people."

A little earlier (the 11th March 2002) I had written this explanation of Autism Spectrum Conditions to my friend in the Majority World:

"That's the conclusion I would come to as well, [my friend in Northern India, in class 12 at the time of these posts].

And I'm glad [the woman with an autistic grandson] gave you the explanation that she did. It is a very good all round one.

The type of thing that is usually referred to as autism was discovered by an Austrian-American man named Leo Kanner. He was supposed to have described some very severe cases, but except for the two mute ones (50% percent of these people don't talk, 25% are echolalic-that is, they repeat things, and 25% communicate meaningfully) these would be considered quite moderate in our times. It's only been around and written about for nearly 60 years, since during the War (1943). So this form is known as classical or Kannerian autism. Kanner and others thought it was child schizophrenia and the term itself comes from the Greek for self (How does a car run?) by a guy named Heller who studied it more than 10 years before. It was meant to describe a part of a phenomena that involved withdrawing from reality into fantasy (that's why I clarify the imagination thing later on). But for many people with this neurological condition, many aspects of reality are too intense, especially the sensory ones.

Now Asperger, another Austrian man, wrote about quite different people. It is he who has informed the discussion about the Tripod of Impairments (social skills, communication-verbal and non-verbal-and imagination-NOT the kind of imagination that is in stories and poems and other things, but the kind that helps us plan things and organise things and anticipate things that go on in our lives) because of Uta Frith and Sula Wolff's translation into English of his original paper.

Kanner has informed us down into the 21st century, whereas Asperger was not even known about since the late 80s. Many people with Asperger's are diagnosed quite late (usually in school age), and the diagnosis is quite iffy. But there are lots of famous people who might have it like Albert Einstein and also Thomas Jefferson.

That doesn't go any way to explain why Catriona is shy (I have a feeling that the remoteness of her location may have something to do with not being able to attend college, just as much as her Aspergers might), but it can often seem to other people like shyness or rudeness. Also there is a lot of neurological things going on with emotions and social situations, like anxiety. Especially if they're not succeeding in social situations or can't fulfill their interests.

And of course there are lots of people on the spectrum between these two profiles. The MOST severe cases are those who regress between 2 and 4 after apparently normal development, and these are called Childhood Disintegrative Disorder. There is also Rett's syndrome which only affects girls. The vast majority affect boys by 10 to 1.

If you wish to find out more locally, there is a place called Action for Autism in India which will give you books and information. They are a new society, only have been around in the past 5 years or so. Have a look at their logo-they have nice happy faces and the ubiqititous puzzle piece.

By the way: "pervasive developmental disorder/problem" is described that way from the Diagnostic and Statistical Manual for Mental Disorders (and has a separate definition in America, to describe the people who are not quite there in terms of meeting the criteria. It is very much an education label as opposed to a psychology one). For me, Autism Spectrum Disorder is much more preferable and accurate-I like to feel that I can include everyone.

And I hope I was not being fearsomely technical here. It's not a mental illness, though it does affect the brain and how other parts of the body talk to the brain. In mental illness thoughts and feelings are disordered because of chemical or experiential imbalances, and they more or less get worse or stay the same. They are almost never in childhood unless they are inheirited. And many many conditions can cause autism like behaviour for different reasons, and benefit from those kinds of treatments.

http://www.autism-india.org/ "

I now say Autism Spectrum Conditions.

The grandmother embraced and endorsed my explanation of her grandson's condition with open arms.

My friend from North India benefited from it and there will be an interesting sequel when we get to Autism Awareness in Asia. There is a very interesting link with autism and the subcontinent when I get there, as well as in South-East Asia.

Today, however, we are focusing on Europe.

Like many good things in our Western civilisation, autism begins in Europe.

The two chief discoverers, as I have pointed out, were Austrian.

When I was reading Leo Kanner's Autistic disturbances of affective contact [during my exam preparations!], I wrote this down:

" 8:38 am - Dupont reads Kanner-at last

Perhaps it was a good thing that [my friend in Cornwall who runs the Blyton Society website and is now a well-known adult fan. I had previously made disclosures to that effect, after having developed a trusting relationship for over a year.] came in at the right time for me last night. I was bowled over and shaking over Kanner's Problemes affectifs (which is Autistic disturbances of affective contact in English). I happened to download it and found it nearly the first try. I would really have liked to read the recoveries, but this paper, in 1943, gives one the most terrific (and terrifying) context that there is. Kanner had sort of been a name in the air, and I will now have to be really careful when calling a thing or a person "Kannerist", because now I know who the bloke was. AND who his patients were. Naturally, I will try not to write UNDER THE INFLUENCE, because it will ruin my writing. Fortunately I can fix things much better than I did in the past. He is the one psychologist that I cannot send up.

Kanner wrote about 11 cases of this new condition. My favourites were Donald and Elaine because they were at the beginning and the end, and many features of the others were mind-blowing in passing...I read it three times in a row to fully comprehend it. The first time I was incredibly shocked and surprised. That so much phenomoena I read about is actually TRUE (and there again, I'd been reading Rimland, which after all is a test on Kanner syndrome-you know the Test for Behaviourally Disturbed Children). M. Kanner wasn't manipulating it for his own purposes. It was funny about Donald and the Dionne quints, how he matched their names to colours.

What I AM shocked at is how many of the mentally ill were among the parents, and how many were also very highly intelligent with the relatives...especially how obsessive the parents were. The children could memorise all kinds of things, like Beethoven symphonies. One likes to think of the implications of Kanner's comments about what he meant by "GENUINE INTEREST IN PEOPLE" and the "pure culture thing". Fascinating too to read about the tests he used with the children. IN 1943 only Freudian psychology had kept going, and Seguin was around. The whole of psychology in America had such an influence from European immigrants (M. Kanner was himself Austrian) and he was so bloody shocked that two of them were Jews the other nine were Anglo-Saxon. I suppose this is more a reflection of the types of people who were prepared to go to psychologists for their children. I know the great poverty before, during and after the war, would have precluded many migrant groups.

Richard and Herbert are really interesting to read, especially with their family background and what they themselves do. It is very...disconcerting...to read about what they don't do, even though we've been taught this all our lives. The only migrant in the group was Paul, and he was British. That Europe should have been displaced or usurped in favour of the English-speaking world (I feel so much for Hans Asperger-and it's only when you look at him that you think Kanner chose the worst cases, that would capture the world's attention-or at least those readers of Nervous Child) is a really disturbing thing and really continues to distort theory and practice. But it is most instructive in other ways for a geopolitican to read.

The whole "pick-up-and-hold" thing-I had never ever read Gesell (much) though he is mentioned in studies of developmental psychology. He said that at four months the child reaches out to his mother. This is a paragraph on the memory thing, which is interesting me the most:

"Their excellent rote memory, coupled with the inability to use language in any other way, often led the parents to stuff them more and more verses, zoologic and botanic names, titles and composers of victrola record pieces, and the like. Thus, form the start, language-wich the children did not use for the purpose of communication-was deflected in a considerable measure to a self-sufficient, semantically and conversationally valueless or grossly distorted memory exercise. To a child 2 or 3 years old, all these words, numbers, and poems("questions and answers of the Presbyterian Catechism"; "Mendelssohn's violin concerto"; the "Twenty-third Psalm"; a French lullaby; an encyclopedia index page) could hardly have more meaning than sets of nonsense syllables to adults. It is difficult to know for certain whether the stuffing as such has contributed essentially to the course of the psychopathologic condition. But it is also difficult to imagine that it did not cut deeply into the development of language as a tool for receiving and imparting meaningful messages."

Well, again, it depends on what one means by communication. It is probably better for the brain to definitely not communicate than to look like communicating and then suddenly not. Nonsense questions that LOOK like communication...well, the parents used this to their advantage. It was an isolated interest but they were able to communicate. That they could and did have meaning however of a concrete kind (and Elaine wasn't able to pick up abstracts-the kinds of abstracts were detailed in her first paragraph, but they were to do with other children).

In his final discussion he talks about literalnes, and the need to be left undisturbed (what most people know of Kanner BEFORE they read him...the "obsessive insistence on sameness). He gives a wonderfully Freudian explanation about food, and why the children had to be left undisturbed. Well, it is true that they had severe difficulties feeding, well at least 6 of them did. It was the constant interference that did it.

He goes on to contrast the relationships between objects and between people, no surprise there I'm afraid. Except with Charles and what he did with this picture. He said the baby was sweet. One suspects that his MOTHER pointed out that picture and said he was sweet and pretty.

"Even thougt most of these children were at one time or another looked upon as feebleminded, they are all unquestionably endowed with good cognitive potentialities. they all have strikingly intelligent physiognomies. Theri faces at the same time give the impression of serious-mindedness and, in the presence of others, an anxious tenseness, probably because of the uneasy anticipation of possible interference. When alone with objects, there is often a placid smile and an expression of beatitude, sometimes accompanied by happy though monotonous hummong and singing. the astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences, bespeak good intelligence in the sense in which this word is commonly used. Binet or similar testing could not be carried out because of limited accessibility. But all the children did well with the Seguin form board."

Resolved-people with Autism Spectrum Disorders AREN'T idiots (in fact Alfred had 140 when they broke through some of his obsessions!). It speaks rather better of intelligence testing in those days than their potentials. I loved the description of beautitude, and it did remind me of the Holy Fool! Sometimes they hummed and they sang. Nor (and this is the thing that hasn't been realised for 50 years) are they schizophrenic.

There are two people in my copy that I missed-Vivian and Barbara. Alfred's case is very interesting. Except for reading it here, I am sure that I won't need to read it again or much think about it. It was an interesting read to see what Kanner meant by words like "affective contact" which sounds so idiotically Freudian, I just HAD to laugh when I saw it in the title. Well, that's one mindset conquered... "

Conquered indeed. But I had much still to learn over the next eighteen months. Mainly that Autism Awareness does not end in Britain or in France - I had in fact acquired my copy of Kanner's paper from the Brazillian Autistic Society.

In December 2002 I wrote:

Then read a great colloborative example by three Polish ladies. Fully aware and stayed myself. And it helps heaps that I maintained a connection regarding the Polish Youth. The boys' names were Kuba and Arek. Arek is quite an important person, very dramatic, very flamboyant. Very fly as the youth will say, influenced by rap. Offspring in partick.

Many a true word is spoken in jest. "What are you doing, making a Polish Rain Man in the Gdansk shipyard?' Healing and recovery, girl. Yes, these are mine. Forgot to explain how Kuba was important - he lives in a world of his own too. Point is ... I so did not realise this was really happening, what I spoke of. But I am not in too deep shit. Wrote in another exercise book about Jakob (Kuba is his nick), just a small summary looking at the website. Kuba is 12 (1999? 2001?) and he has an Autism Spectrum Disorder. He was really badly affected by aversives and restraints (onion face! onion face!) at a well-known Gdansk facility for the children. He went there for 5 years and then in 1997 it changed. Horror horror. And um ... um ... um ... um ... feeling really sick. Have had enough self-blame and self-reproach. I will write more clearly later. Indeed will make feature of it The Geopolitical Woman.

It will pass. What I want or don't want is not a factor in my happiness.

I took a little more time to reflect on Kuba's story and what this means for autism services in Poland.

Then I will share an example of Poland's best practice. The Ministry of Health seems well-informed, and there is a terrific boy named Mariusz Cierlinski who has been helped through Son-Rise.

Mothers defeat behaviourists in Polish rebellion (10.12.2002)

Eva Szymytowska
Anna Dobrowolska.

Joanna Mieczhonska is the translator

This was set in 2001. The boy who received Applied Behavioural Analysis is called Kuba and he is 12. (His real name is Jakub).

These abuses happened in the Autism Centre in Gdansk and Gdynia. Jakub had been going there since he was 5. Then in 1997 things became very different. His therapist asked him a direct question: WHERE ARE YOU? Twice she does this. Kuba could answer the question quite well but in a few different ways.

His friend in the Centre was made to lie down. Poor boy: he ends up on his face. Five therapists keep him on the floor. Yes, it's quite inhumane. He might have wanted to sunbathe. I know the footpath thing is for generalising but it can be really mean. Also it goes against the stated policies of the Centre.

The immediate consequences for Jakub? He didn't want to take his bath and he has nightmares. for all the 4 hours he screamed. This was all very terrifying for him and his mother Hanka.

It won't make him open to the world, nor independent! If ever he should go to work and have a bad boss what he's been through will go through his brain.

Seven children left this place: but there's still a waiting list.

Malogorzata Rybicka wrote something that makes no sense in this context. It isn't the Hunchback growing to be honest. It does make me really angry.

This is a speech written for a Warsaw conference in 1999. Gdynia 2001 there was a session in Violence in Therapy

Of course the million zloty question:

Why doesn't Autisme Europe know about this?

And what could/would/should they do about it?

Received this information from a place called CIBRA which has sotries about aversive treatments all over the world.

Many of the methods are similar to these I have seen and heard for reactive attachment disorder. They are used normally in two extreme levels of restriction - Residential Treatment Centres and mental hospitals.

But there are some nice things. He got to be a frog in the play. His friend Arek was in it too. And the other boys and girls helped out.

Dziukuje bardzo, Eva, Anna and Joanna. Especially Jakub.

So here we are.

I promised you an example of Polish best practice.

Contrary to popular belief, it is not behind the covers of my books. :-). Even though there is a little autistic boy named Wladek somewhere. He was born after the book, though.

The praxis in my own writing is mucked up and compromised for various reasons. I write an excellent parody of Applied Behavioural Analysis which probably is not really pertinent to this general consideration of Autism Awareness in Europe.

At the grassroots level Autisme Europe doesn't seem to know much of anything.

So many Europeans go to America for treatment.

This is what Jacek Cierlinski of Warsaw did for his son.

He chose the Autism Treatment Centre of America, which programme Son-Rise I had previously heard about from a Scottish friend.

"

My own web interests are pretty much the same ones that I have in real
life, including "Research Methods in Psychology", international
relations and European unity, a club on the Labour Party, Winnie the
Pooh, the Eurovision Song Contest, and a few Harry Potter clubs/sites
(no mailing lists though-I joined CRAZY FOR HARRY POTTER at the height
of its popularity and don't even bother keeping up). I join clubs to
help me make my website better, and lots of language and culture clubs.
 
I visit a few clubs on Delphi daily, including the Girl Woman Reading
Writing Forum, and 2 Chalet School forums. Oddly enough there is/was
an Enid Blyton forum but no-one seems to post in it. Delphi Forums are
far more general and active than Yahoo Clubs, and they have a more
user-friendly interface, including the use of HTML. They're usually
quite private as well.
 
Lately I've been discovering newsgroups and learning all about their
culture, and have even found the courage to post a few messages. But
mostly I lurk on there-they're very scary and troll-ridden places.
Usenet is so political, I always think, but it was the start of the
Net so I give it the respect its due.
 
I am reading lots of sites on Eastern Europe to do with the researches
for my latest book. This has taken a great deal of my time this year,
but I greatly enjoy the honesty on those lists, and have never ever
broken a confidence. On Yahoo my clubs include Channel Islands and
Warren the Gerbil's Official Club.
 
What "Little Book Room"? That's Collecting Books and Magazines, and
the first E-Group I ever joined...and could you tell me about your
writing club?
 
My current obsessions on the web including downloading games and
documents I would never find otherwise, including such diverse
documents as "Monty Python's Life of Brian" and "Autistic Disturbances
of Affective Contact" and of course many many others from sites that I
have seen/read."



...
Dear [my Scottish friend who is a moderator of the Blyton e-group],
 
I know almost nothing about what is going on in that field in America.

I wasn't going to stay ignorant for long and I soon made it my business to find out.

I posted a post about imagination in Son-Rise children, as I was then researching creative and imaginative behaviour in children with Reactive Attachment Disorder. I may well have used an autistic group as controls and then also a typically developing group. There is a good site about science and peer review.

I then came to read Kaufman's self-published books and Miracle to Believe in has moved me so much.

If choosing happiness and evaluating my core beliefs has helped me even a little in my life and work, then I would like to thank Barry Neil "Bears" Kauffman for it.

I parodied Options Institute. I want my Wladek's intervention programme to be the best of Pathfinders (Jim Messina of Tampa Bay, Florida, maker of the Coping.org website), Communicating Partners (James D. McDonald or "Doctor Jim" of Columbus, Ohio) and the Option Institute. And I am willing to parody anything which doesn't fit into these criteria. I may well find entries in the main Collegiate series and the Remedial School dealing with Autism Awareness. My heroines do often interact with autistic people, whether they know it or not. And Floortime for playtime.

" Dear everyone at SonRise/Options Institute,

I admit I am a rank outsider first of all. My friend Avital Levin who lives in Scotland and is a SonRise volunteer (and I might add has seen the programme work in real life!) introduced me to what you guys were and what you did for children and young people with various disabilities. ;-)

I was wondering what your children's imaginative play/doings were like before, during and after a SonRise programme?

Have you and your children done any interesting/imaginative things lately because of SonRise? If so, what kinds of things? How do you continue to stimualte and develop them further?

Just wondering
Your transatlantic friend and researcher,

Adelaide Dupont"
I had written in July of 2001.

Ten days later, I joined the board for special education and psychology which has taken a great deal of my life over the past five years. It has given far more than it has taken, at least in my experience. The author has moved to Europe specifically because of its tolerance and raises Black Mountain Welsh sheep. One of the people with whom I made fast friends and who joined on July 22 is Julia Piper K.... and she has Asperger Syndrome and lives in Munich. So I have learnt much more about autism in Europe and elsewhere from this quarter. A well-known American member, who writes many wonderful reviews for Amazon (and who probably inspired me to join through said review for Somebody Else's Kids which I had read in March 2000), found out she had Asperger Syndrome in 2003 and there was a lot of awareness and growth sharing. I lurked through 2003 to the present, and by September 2004 barely visited at all. I began coming back reguarly in November 2005 and may post if circumstances are right. I do not think I will do so much before the 24th.

I then asked about Raun Kaufman's lectures on the 30th September:

"
It is now the 30th September 2001 here. I should like to know some wonderful first-hand attitude before it gets onto the site. I am almost sure it will be published at the same time as the start-ups for our country, and I would be particularly interested in inspiring things he said about Option in comparison to other therapies."

Here is Jacek's writing about the Options Institute. He is the man who wrote the Polish edition of the page:

" Hi Mario,
In my opinion these 5 days has been worth all money of the world. It is true that we have been leading our Son-Rise Program more or less properly (rather less) during last 9 months and we have been prepared for the next step of knowledge. This is the main condition of the participation's purposefulness. Mariusz started to speak more (english too :-)), his eye contact is better, we have understood a lot regard to his motivations, behaviours and what is the most important we see the clear plan in front of us. The knowledge's enormity that we have posessed requies time to be ordered and understood to the end. I will be obliged to translate all materials we have obtained. Yesterday it was a meeting of all our 16 volunteers. During 4 long hours we were speaking, explainng and presenting videos. It was worth to observe their fascinated faces in front of the screen. It seemed that they could enter into TV-set to be in the playroom with Aarton, Kelly, Jessica ... We know that some of them can work like tham, they needs only "the final cut" regard to the technics because they have 3 x E. Now there will be less number of unknows, troubles and questions "what to do when...". We have diagnosed child, the plan of his treatment, clear view regard to a lot of problems, and many, many targets to reach. Be sure, if you are prepared to it the Intensive Adv. Training is worth every efford.
Warmest regards
-Jacek C.
P.S. DMA, thank you for the message that we have found in the basket. It was very pleasure tio find it.
P.S. When we leaved the Institute we noticed the lack of the table "The Place of Miracles". It is interesting what occured with it...?"

...

" I'd like to thank to all of you for this great 5 days. Now we have new look on Mariusz and the way of his treatment. I have taken with me a small stone from the path of the campus hoping that it will be any good talisman for Mariusz.
Dear Samahria, William, Kat, Aaron, Jessica, Kelly, Lynette, Susan, Suzanne, Joanna, Steve, Clyde; my English is too poor to explain what we feel.
Good, bless you all. "

...

A few months before in March 2004, Jacek and Anna were wondering how to reconcile education with joining/following Mariusz's lead.

I am certain the parents here, not only those of autistic children, will identify very much with their feelings:

" Good morning to all of you on another side of Atlantic Ocean(although for you it is not any morning now).
It seems to me that English language is easier than Polish if you take under consideration the matter of speech. You have a lot of simplifications, idioms and pronunciation is really simpler for children than that one met in Slavian languages. When I observe tortures that Mariusz survives trying to speak such a words like " pszczo³a" (a bee) or "czeœæ" "hi!" I cannot resist the impression that English could be for him easier. It is even impossible to explain to you the way of spelling regard to mentioned words. It is like a rustle in the deciduous forest during the wind. The matter of grammar is another story. Every noun has 6 cases and these forms differs one from another because of endings. The same situation is in case of verbs.
Mariusz uses very poor speach (in Polish) that may be from time to time quite well in English. We afraid that his education regard to the speech will be twice longer than in case of American or English child (in comparable state of course). He is able to compose paper bites with words into phrase but he is not able to speak the same words properly. ex.
Your pronuncoation of the verb "to want" is always the same. In Polish language the same verb "chcieæ" is different in every person and in every time.
We will take with us to Sheffield the translator especially for him but we afraid that the effectiveness of Intensive regard to speech will be twice less than in case of your children even taking under consideration the mastery of Son-Rise facilitators. I know (by internet) one Polish mother in USA that gave teaching her autistic son Polish language up because of huge troubles. His progress in English is very impressive. Unfortunately we have not any alternative although as a last resort we would be able to accept English as Mariusz' first language if he caught speak it properly understanding what he would like to put into words.
Maybe we are wrong...?
Warmest regards to all
- Jacek and Anna"

...

" Eyelashes!? Dear Josha, Mariusz puts softly his fingers into eye sockets and orders: "mrugaj!" ( twinkle!) or places his nose or lips. It seems that our children have the same "izms".
The word "zlin" doesn't mean anything. This is the play of course from his side. Every time during my session with him in playroom he says to me "giligili" (tickletickle) and our play becomes to be rather not creative. he can read short words, he can count, he knows letters and digits, he sings (very nicely), he knows short poems. BUT HE DOESN'T WANT TO SPEAK! He doesn't want to make education exercices. Maybe we are too boring for him...?
Your advises are very interesting for us because it seems that our children are much the same. Thank you for them. We will try all of course.

Warmest regards
-Jacek Cierliñski
Warsaw"

...
Dear Josha,
Thank you for answer. Your advices are very interesting. The main problem with Mariusz is, that his level of sensorial distortions is very high. It implicates fact, that our son prefeers to be tickled, hugged, clasped. How to change such fancies into educational skills? He is lazy and contrary, yesterday funny story occured in our playroom.
I showed him the picture with the fox (in Polish language lis - English pronunciation "leas" - we have no articles in our language). Mariusz perfectly knows what is the fox and how to speak "lis".
Dialogue that followed between us:
- Mariusz, pleeeeeaaaase tell me what is here? (lying on the floor and keeping small picture between our eyes with my face expression like crazy old chimpanzee to keep his attention on me)
- Zlin - he said looking on me
- Maaaaariusz, great! but pleaaase.....I know that you know what is it...
- Zlin (with smile on face)
(Ah you small prankster - I though)
- Zlin? Mariusz, please show where is zlin?
- Lis - he said irronically and one second later:
- Zlin!(triumphally)
And later
-Come on! Tickling, tickling !!!!!!!!!
And it was the end of education.

The problem is that Mariusz has not any interests apart of sensorial behaviours; to play with water (lately he has started to pour off water from his glass on the floor!), singing one fragment fo a sing around and around, he touches from time to time one place on the wall with his nose...
How to wake any interests up?
Is it too early? He is 6,5 years old!
We will concentrate on his social skills, rather not on education but we would like not to loose his current knowledge.
Warmest regards
-Jacek Cierliñski
Warsaw
...
" After 4 months of our hard work with 14 volunteers my 6.5 years old Mariusz is going ahead. We try to convince him to educational exercices. The problem is that Mariusz is generally lazy and we are obliged to use dialog and action's loops to gain something from him. He can just read letters and even join them into short words, he can write letters, he can work well with puzzles but he doesn't want to do it. One mother of autistic doughter that completed all trainings in Sheffield (state and character of her daughter's distortions completely other than Mariusz) recommends us to resignate of education skills focusing on following and social matters. We afraid that Mariusz may go back with his education abilities if we will not to work on them. This is a kind of crossway and big question. Where is that Archimedes' gold remedy? How to reconcile all together? How to avoid tediousness working on his education? Generally what to do? We know that in May during our Intensive Adv. Training we will get solution but we would like to take decision now. Maybe someone of you has any experiences?
Warmest regards
-Jacek Cierliñski
Warsaw"

Here is a nice long thread that he started in June. This shows us all that Mariusz is definitely receiving best practice education and well equivalent with the best in Poland and in Europe generally.

http://www.autismtreatmentcenter.org/cgi-local/ikonboard/topic.cgi?forum=22&topic=307

I think you will all find it very inspiring!

Mariusz seems to have good music taste:

" Dear Son-Rise Family,
I have proposition to create special topic to put there information about exemples of our children's progress. We may write here not only happy events but descriptions of the way to them. It may be both carrying hope and instructive for all of us.
I would like to begin.
Yesterday Mariusz (6,5) suddenly started to play with the toy called "The Small Doctor". First time he used plastic stethoscope, thermometer and syringe regard to the doll. Later he started to egzamine himself. It took only some minutes; he stopped to do it when we started to try to help him. It is interesting that he is more creative when nobody tries to lead his play.
Apart of it he swiched the RCR on and he was listening the music about 20 minutes with attention. The record contained religious dynamic songs performed by childish band. Later he sang them (he is gifted for music having sweet voice). When we tried to turn the level of noise down, he turned it again on immediately. It is very interesting that he prefers special kind of music regard to the atmosphere. The textes of the songs he heard yesterday are rather melancholic.
Another song he preferes (from some years) is "Smells like a teen Spirit" of Nirvana. Although Mariusz cannot understand what Kurt Kobain sings there it seems that he can feel the special atmosphere of this song. It is the matter of reflection for us, parents that Kurt Kobain's "shout of the death" is such attractive for Mariusz. We have stopped to play Nirvana's songs in his presence taking under consideration possible consequences for him.
One way of another his ability to listen music we may try as success. He presents then high lavel of attention.
Have you got any interesting informations?
Warmest regards
-Jacek Cierliñski
Warsaw"

I will leave you with this joyous testimony:

" Dear dma,
Believe me that in your language the sound "th" is the most strange and difficult. I know a lot of English speaking people in Poland that speak it as "s" or "f". They simply cannot pronunce this sound. This is very big success of Norman
. Mariusz is lazy, terribly lazy and that is why his speech is poor. But he can sing like a nightingale having sweet voice and an ear for music. There are two students of Music University among our volunteers and they are amazing by his ability. Last three day we heard frequently in Polish TV and Radio " The Ode to Hapiness" by L. van Beethoven (because of Poland's entrance to European Community - this is the European anthem). Mariusz started to hum it faultlessy.
In 2,5 weeks ww will be in Sheffield on Intensive. We need this stay a lot. One year after Start-up we feel ourselves impoverished and tired. It affects volunteers. It is the most dangerous. Mariusz tries to escape from his playroom because we are simply boring. We needs new ideas, boost and support.
Warmest regards to all
-Jacek C."


Moving right along from the individual to the institutional

I am sure that you will all need to understand that not all autistic people are lazy. They are working very hard to understand and stand the world as they/we see it, even at a young age.

Here is my long paper about Complex neuropsychological behavioural disorder of the post-institutionalised child which I wrote in September 1998. I will put relevant excerpts here. I think it has interests because of the changes we have to make to education and training to accommodate these children, especially as the first generation of Romanian orphanage children have become teenagers and adults in Western nations.

I hoped to make this speech to a conference of Parent Network for the Post-Institutionalised Child. Perhaps I still may, but I shall share it with you here!

It is perhaps the greatest act of courage to have your own world and live in it. It is ever greater to allow someone else to live in theirs. The trauma of migration often brings this choice home to us in a profound and confronting way. It is a choice that we accept and certainly keep in the forefront when we consider the best ways of meeting frightened, unhappy Eastern and Central European children on their terms. Will imposing certain values of civilisation and development necessarily make these children more secure, and therefore more receptive to the attention and affection of their caregivers? What practical suggestions are there to understand and treat their [reactive and adaptive] behaviour [while we value their essential personhood]?

Though the children from the Romanian and Russian orphanages are becoming the most psychologically scrutinised group of deprived infants in history, which is anything but a simple positive immediate study! - they are not, and should not become, "the forgotten people" at least in America. They are a prime example - the human face - of a pioneering look at our deepest feelings about the roles of parents and other caregivers in the nurturing of their children, and of society in modelling and facillitating this role - and of what happens when the ties are cut. Psychology and psychoanalysis are particularly suspect because they purport to be a scientific objective way of analysing our deepest relationships. They are the fields which set the standards in people's minds by appealing to their unconscious and their various insecurities. And yet when we are dealing with this problem we are given the usual psychological cliches. The insularity of the psychological and educational fields means that displacement behaviour is not recognised, defined or treated appropriately. I seriously doubt its milleu is understood by the people who are trained to deal with it, who are rare.

First things first. The migration of young children halfway across the world before their full developmental awareness is completed - if it must be done at all - some consideration and basic knowledge of the start of the bonding process - generally 6 months or before - is not something I would personally recommend. One could come into their country for some years before one plans to adopt - even better - immerse your children into the culture. And learn the language and customs. Just because one part of the culture does not serve the children well, there is no reason for the adoptive parents to completely do away rest, in their mind and soul or the child's. It may prove a very important link to tolerance and understanding and very helpful later because you have a first-hand background and be in the ascendant explaining yourself in these embarrassing situations. It will consideratedly develop those of the attachments that are not disrupted by transition. One of the major causes of displacement behaviour, and the younger this break occurs, the more difficult to resolve - is a feeling of forever being an outsider to your homeland, losing your roots and your survival skills. If one never had that crucial connection, one would forever wonder what was missing and probably in consequence develop behaviour problems that may lead to emotional disorders. If one is cut off from one's country, one will be cut off from the world. In this era when the nation-state competes with the internationalist global village, thwarted patriotism has extremely dire and perverse consequences.

(I do not think in 1998 that I even imagined anything like September 11 or Iraq, though Saddam was always in the background).

Many people are perhaps not fully aware of the sweat, blood and tears that it takes to work and raise with these children. Remember, the most normal people do not learn about themselves automatically and unconsciously. Yet we are in a state of permanent shock when we find these children have to be taught formally the most basic things about being human. Americans are perhaps less surprised technically than those in Britain and the Commonwealth and europe - the lessons of research into the causes and treatments of pervasive developmental disorders, keeps them modest. We believe that until objective, reliable neurological evidence can be found - these children are completely at the mercy of their environment. We cannot escape the fact that what connects displacement behaviour and autism in whatever degrees - is alienation. We would theorise that in the respective disorders, causes would be quite different. Certianly, what impresses the unitiatied (and me) I admit most are the striking tendencies of what we have learnt to call autism. The lack of emotional contact and the stereotyped behaviours. The question of which of the present diagnostic categories - if any - our cases would fit into, is a very delicate one, and one in which I have no professional training. However, I am a concerned and interested, though misguided, young woman and hope that my well-developed geopolitical perspective in Europe and my tremendous psychological acumen will give you a clarified look at the issues and implications invovled in a tolerant, broadminded, personal and detailed outlook. Talk shows, lectures, support groups and such stuff ... We as an association for students and ordinary people to gain awareness and information and understanding can mix psychology and foreign affirs on a shaking ethical round and encourage people to contribute and support in crisis. We would feel morally impotent if we let the world's most powerful country do all the dirty work desite their enormous Government humanitarian funding and committment. In the past decade, many British and Europeans have abdicated their responsibility and done nothing. If we can give assistance with our bedside manner and inside experience this would be a good start. One of our aims is to give practical advice from a distance and offer our expertise from many sources and diverse media.

We will certainly endeavour to do so here.

Five years later, I did endeavour to do so. By the way Iraq had just happened. Meanwhile on the Families for Russian and Ukrainian Adoption board, a woman had written about her then 14-month-old son, Brian. I hope he is living a happy life and developing well, as so many children from these backgrounds do go on to do. The vast majority, though classed special needs, will have no behaviour or emotional problems after a crucial period.

What follows is my evaluation of the situation. Remember: "I am a concerned and interested, though misguided, young woman and hope that my well-developed geopolitical perspective in Europe and my tremendous psychological acumen will give you a clarified look at the issues and implications invovled in a tolerant, broadminded, personal and detailed outlook."

THE (AMERICAN DREAM) LIFE OF BRIAN: the developed personal becomes the mature geopolitical
(Orthodox Easter 2003)


A week is a long time in politics. In three of them, we have just had the Iraqi-Coalition Forces war. We are in various stages of recovery from the Cold War, and the news of the accesion in Greece, which involved 10 Central European nations was very heartwarming and a vital process. I think many of us are experiencing the joys and tensions that will make us geopolitically mature. To be mature is to come to terms with small gains and potential losses over a long period of time. When things progress quickly over 1, 5, 10 years, in the broad sweep, we forget the small miracles and the processes involved in decision making. Since September 11 2001 - my immediate impressions of America and Russia - they get along. But they are still 2 very very different nations.

Can you cry in Russian? Well, I don't know yet. I won't know in some time. I can appeal only to those who have empirical knowledge and expert opinions.

Five weeks: I consdier this the week after the fourth week. I perceive them not as a bundle such as two or three weeks would be. No-one has ever said to me: 'Five weeks before or five weeks since" I know five weeks as half-term.

Same with ten months. Before I made it into a major plot point, I again thought of it as the month after nine months and before eleven. Nine months is of course the time in the uterus, and it is also the school year in Britain, America and most European nations.

So when there's little temporal context, it looks like nothing happened. If more than four significant things happen to me in a day/week/month, or I write more than four paragraphs, I become more stupefied. I remember information in three or four unit blocks. For instance, taking the EQ/SQ test designed by Simon Baron-Cohen on my computer, I found it difficult to recall the three before or after, thus making life difficult and deprivign me of essential contextual information. I score also in the bottom quartile of activities that require non-verbal sequencing (Picture Arrangement). On the EQ I scored 29 for E and S. I have a balanced brain, but lower than average in empathesising and systemising.

About the EQ:

The neurotypical man scores on average 42 and the woman 47.

Someone with Autism Spectrum Disorder scores 20 on average.

Someone with higher E scores has more of a femlae brain, and someone with a high S score has a male brain.

About the SQ:

So if you believed that I was neurotypical I would not be very empathetic, but if you believed I had an ASD I would do a bit better than my counterparts. You would then assume from my relatively below average score that autistic-like thinking processes have made their mark on my development and my life. Or that I am male (which'd be confirmed if I had scored five to fourteen). But then I would have a relatively low systematising score.

I believe this test is reliable, valid and covers a wide range of human behaviour. I scored on the Asperger Quotient 24 when I took it on April 2002. The neurotypical average is 16 and the Asperger/HFA average is 32.

The question format is strongly/slightly agree/disagree. It is also straight verbal and in the 1st person, whereas an EQ was second person hypothetical and had more detailed answers, though not enough to lead me on. It was EQ and I scored 160. The definitions were strongly grounded in Daniel Goleman's methedology, and my answers were Golemanised.

I'm very picky about the assessments I subject myself to, even on my own free will. In 2001, I never would have done anything which smelt like pop psychology. With me, there's a continuum of options from Pop to mainstream to esteoric.

Perhaps the most mainstream one can get is Gesell's development scale which many pop psychologists have repeated for their own purposes. He was trying to describe and analyse the normal development of the human organism in the biological sense. Empirically, we know that children develop differently from adults. The quality and quantity of this development changes over time. The pattern is essentially this: sensory, motor, intellectual, emotional. This is how the brain develops. it develops very very fast over the first three years of life. This is established biologically and empirically.

There are two ways to develop: to be process oriented and goal oriented. It'd be more correct to say: two ways to look at development. Also some development is more important or flashy than others. An example is lingustic development. The first word is something we all remember. It fills us with visceral excitement and gives us something to build on. It communicates a most significant shift in the relationship. Most development is based on relationship or at least assumes the presence of one.

That's why the psychologists got upset when they saw Grisha smile. Now a smile in itself is a beautiful thing. But it has relational functions. Indeed, it is expected under certain conditions, and a person's awareness of these conditions is more selective and sophisticated. That is you smile at a particular person in a particular time at a particular way. Also they believed that a smile is the outcome of a relation to an external process. Is smiling to oneself then eccentric? (No. According to the literal interpretation of the word, eccentric is more other oriented. It has become a very good word to described how others are impacted and impressed by our conduct.)

We are expected to co-ordinate several complex systems in a logical, rational and appropriate way. We judge our thoughts, feelings and actions in the larger context.

We live in a world of actions and thoughts, said a wise man who does his work in Columbus, Ohio. Children live in a world of action and sensation. You'd expect someone like me to have trouble to relate to children. I am a very verbal person. I find it difficult to be with children in the present. Especially when they do not relate to a code. Lots of people have instinctive and intuitive relationships with children. Or rather we are conditioned to believe this is the case. I am happiest with children when I do have that intuitive and instinctive spark. This is all too brief and short-term and my priorities do not include the tasks and conditions that our society imposes for the relationships to be longer-term. Put really simply, when you're a mother, your relationship with children changes. This is one that people like me are unprepared for, and if we go into our bad old ways, they seem like crimes against humanity.

I have not got a sanctified or idealistic view about mother/childhood, whether it is normal, delayed or deviant. I am not afraid to put labels like delayed or deviant on mothers as well as children. I hate mothers being perfect, and I hated myself as a child for expecting my mother to be perfect. My mother is a good person and she did her best. She had me later in life, after a successful career and education. Decency and civility are my cardinal virtues, among with honesty, compassion and independence.

We are not required to love everyone in civilised society. rather, they deserve respect and tolerance. Respect and tolerance are measured in intention and action. Until children are four or five, they cannot see intention. They see only action. We have some inherent biases in that our first relationships are based on love. Respect is generally being equals, but tolerance is usually a low-base virtue. It is usually shown from a superior to an inferior. We are rarely very free to say what we will or will not tolerate because it compromises respect and love. Also tolerance is a low-rate virtue because it is a universal one and we'd all love to make our unique contribution. However a wider tolerance level means we come to value more the things we respect and love. Lots of people see tolerance as two things: the cold fish or the doormat. It isn't a thing that people want to be, and it is not really cool. Yet it is a linchpin to a free and democratic society. The consequences of intolerance, for me, are just too much and too painful to live with. It takes a certain bravery. I have learnt to take delay and deviance so much better because tolerance gives me the longer-term view. It makes me want to include them as realities in my life, and not to idealise and devalue them. Instead we are becoming that much freer to say what we will or will not accept.

It's really hard to think long-term when you have no sense of the spatial and temporal consequences involved. And it is just so easy to live in the moment, and again, have no awareness of the consequences. Life's consequences are inherently unpredictable. Some people find it much easier to deal with unpredictability than others. Thus we focus on what we can control, or what we think we can control.

Many of the milestones we so cherished have in them a component where we can control our environment. Control is a very particular set of responses to a set of circumstances and expectations. If we expect to have control of our lives they tend to go better, and if we don't they don't. When we make control our reason for living or not living, we make ourselves a mess. Also we have different control thresholds. I have a quite low one. Transference of control is quite tricky. It's really ahrd to think that people are part of the environment, rather than people as people.

Now all this is hard to work out in five weeks or ten months, particularly when they're not marked by the temporal brain.

I never ever thought ten months an interesting point of development. I don't have a mental image for what a child of that age is supposed to do. And all my mental images are white male Anglo-Saxons. No expectations, no handicaps - for me, anyway. But many people, especially busy ones, expect something to be happening every day, every week, every month. I find my mental appraisal of days, weeks, months is not easily tied to sequences or experiences. More than three days in or out, and I am so out to lunch. This is made worse by dissociative episodes in whcih I lose time. I don't go to bed at a certain time, commit to a certain tie. I find time-related expectations and constructs constricting., I find it hard to conceptualise what Americans do with my time. I am yet to marry my subjective experience of time with a clock or calendar. It would take me all year to work out my menstrual period and its place in the larger cycle, and that is an essential part of being pregnant and having sex. My lack of planning and management in this very life skill puts me in danger, enve htough it is not so immediate and visceral as in other nations.

I don't mean to imply at all that a unplanned child is a mistake child. No child is a mistake. But timing is so important.

Many people say that 2 months - 8 weeks -56 days - is a reasonable time to transition. I am bewildered by the happenigns in a day, and yet a month is so long. I lvoe April and September - they are short months. June and November seem to be longer, yet they have the same numer of days.

But these particular 2 months are 10 and 12 months. Twelve months is when I expect many things to happen. It is only in the context of a year that I can confidently speak of delay, and 2 years that I can speak of deviance. The first too radical, and the second too conservative. Because of the sensitivity it's always going to be hard to find a happy medium. For instance, many parents oscillate in their descriptions between baby and little boy/girl.

I always always thought I could tell deviance so well. Becuase it has a connotation of being obviously inappropriate at any age. Now I learn to reserve judgement. But is that really so helpful? Is it really honest? It is intuition and instinct that tells me, but without the proof, I reserve judgement. And deviance means, unusual not inappropriate.

I consider 10 months out of judgement zone.

Let me tell you sometihng here. In September 1998 I thought attachment theory was bullshit. I had not yet met my current significant other, but I did by the end of that year. Even that couldn't have prepared me for the vissitudes of 1999. Even now I'm suspicious of extremists, but I gratly admire Groza and Federici. I mean, tohave that space of a year, to think and learn and to be challenged and not flinch or look back, to start to think I can do this. Never give up. There is always development. So long as you don't give in and hate yourself. At that time in September 1999 I was sick and stressed. My cousin Moriah was 16 months old. That kept me alive. June 1998 I was seriously suicidal and she was 5 weeks old. I'm a happy woman because I stuck around and now I have my freedom. May 2000 I began my geopolitical work. I really put iut in, learning about reactive attachment disorder and the co-morbidities. It's been ahrd to get re-oriented into post-institutional syndrome when I've been swotting so hard on Cluster B personality disorders and Munchausen's proxy. So now i know how the DSM works and the ICD too. Without that sort of a context I'd have no idea what is said in Russia.

I really really understand how it's like to be on a limb, to do this on your own. It took me six long years to form the contacts and tell people. Thais Tepper and Lois Hanlon and the others are going to die out. Tell the truth, there aren't the large scale studies nor the peer reviewed articles that could give informed decisions, so you get all these idiocies about labels being over or under used. I've been so busy learning about conduct disorders.

Anyway, babies are sacred turg. That's why I couldn't do this in 1998-99. I thought mothers were sacred turf too. I read the Orthogenic School in Recollections and Reflections. I know how these institutions work. As a mater of fact, it's just like boarding school. Me, I write in the boarding school milleu. I read Feral Children and Autistic Children. That was terrific epecially filling it up because I knew about the Wild Boy of Averyon.

So how do I get from the Wild Boy of Averyon to the Life of Brian? I think Victor represents all the teenagers who seem hopeless. He was fought over by so many people, yet he made big contributions to mental health, learning theory and language develpoment. At the beginning of the 20th century the established psychological balance shifted from Central Europe to America. One of the many effects was Soviet dissenters being put into prison for psychiatric illness. Soviet terminology is very difficult to understand in gneral, and further serves an agenda. Soveit systems was closed to outsiders. Bettelheim was not a product of the Soviets but of the german Nazi system. Just as the looting of Iraq has horrified many, many medical records were lost leading to impaired decision making. But there are many greats Kanner (brought to America child psychiatry and autism - we all of us are indebted to him) Spitz (attachment theory and hospitalism) Asperger (better to get to know him later than never). from the soviet system there was Vygotsky and Luria and some others. It would be as well to read and think about some of these people as well as Mme Guerin and Sister Victorine.

There was such a rich and civilised cutlure in those times and places. Art, music, drama. Immigration has contributed greatly to psychology through its human financial resources, but does psychology make things better for immigrants if it serves the needs and interests of the dominant culture?

The great Stnaley Greenspan brings to the table his incisive popular understanding of human development
, in particular social interaction and emotional development. His staple method is a technique known as floortime, which seems a world away from children in their cribs. He really makes you feel that you're saving the world and doing something by spending time with your kid or kids. He makes use of common routines and interets. At the very least, you do it at meal time, book time, bath time, bed time and map time and most of all play time. Car time too, whther you're going out or to a therapy. The currency of floor time is to open and close circles of communcation, with a wide range of emotional themes.

There is one thing specifically promoting soical and communicative competence in late talkers. Is your child a constant social sounder?

This means, does he or she take turns with actions, sounds and words and faces? Jim McDonald of Columbus, Ohio, designed the ECO programme for parents to help their children to socialise and ocmmunicate. Basically you watch the child very carefully, imitate a small thing he does and then he imitates you. You go on with this for four turns or so and then you add somthing diferent. You become also a living dictionary, as I am for my cousins, you put words to the daily environment. This is really good for premature babies and those who are having stressful medical procedures, especailly those which affect their speech. Of thte recognisd disabilities he deals with McDonald's clientele is split even between Autism and Down's Syndrome. The first Dr Jimmers are now teenagers, like Mark Mitchell and John Wallner, who are great role models. It is meant to be very very playful and encourages you to do what the child can do instead of what adults do, which carries social and communicative baggage that children with delays find a barrier to relationships. In regard to inappropriate behaviour, he recommends that you talk less to it, silently restrict freedom and give the moral lesson later. On the other hand you talk more to behaviour you want. He finds that lots of people talk more to old beahvuour even if more mature conduct is in the child's repetoire, and also to socially abusive behaviour.

Greenspan, on the other hand, advocates the development of symbolic and abstract thinking, especially for those lucky children who progress fast after one or two years in his methods. He has an innovative characterising system with four groups who are sorted out by their sensory processing: like visual memory, visual comprehension auditory processing. Some of hyperreactive and some are hyporeactive, but still others are sensory seeking. Group 2 needs scripts, and group 1 has lots of imagination, but one subgroup of group 2 speaks more spontaneously becuase of their demanding nature which creates drama. Drama is a big thing in floor time. They are sorted out also by their social behaviour. Group 1 develops the capacity or has part of it already Group 3 has the capacity but finds it difficult to use it because of motor problems, motor skills and response to intervention. That's rihgt, visual, motor and auditory. In his ICDL book of guidelines (chapters 19-25) the colloboration has resulted in many developmentally-based methods for specific issues such as Lindawood and FastForward as well as great ways to work with adolescents and adults who may be in institutional settings due to their behaviour. Caveat emptor; Greenspan's groups are for static dysymmentries not for simplpe statics or progressives. Again with these good people it's a long haul but a different long haul. But at least Greenspan and Mcdonald make it fun and dvelopmentally appropriate. And sequencing is pretty important too.

I will assuming continuning this Greenspan exploration that we are somewhere between Self-Regulation and interest in the world and Complex Sense of Self. This takes in from 3 to 18 months. We cannot deny that an enormous amount of growth takes place - not if we are neurologically and psycholoigcally responsibel. There is a lot of focus on giving things in one area of the Motor Skills teachings. grabbing things in hands and banigng blocks. I will check my FeSA (Functional Emotional Assessment Scale, a most indispensible tool for any early interventor, particularly as it has concrete goals).

It seems Brian has a love for music, particularly in social interpersonal situations. Singing and music really seems to make people energetic and excited and enthusiastic. There are lots of wonderful childrens' record out there. The exemplar is the wiggles, who really seem to have it in tune. The best bit is the costumes, actions and Dorohty the Dionsaur. In Australia they have released melodies of lullabies. And seeing as he is a Brian, it is well to look through the Beach Boys catalogue for sun, fun and harmony. The Life of Brian. Tehre's a lovely song by Shirley Bassey at the start and of course as I had said Look on the bright side of life. Mr frisbee will make you laugh.

Chronologically he would in the middle of Intentional Two-Way Communiaction, but he is in Relationships, Attachment and Intimacy, a month in that.

Might be well to look at the Attainment Milestones scale, the first two stages. Look at Brian's regulatory patters and sensory modulation. I am sure a lot of things have to happen and be mastered before he knows you as his mother.

Too often we give the mentally retarded short shrift. Janis Cooke Newman wrote of a boy of her acquaintance that he wore a helmet. She didn't want to be teaching her son the names of common fruits and vegetables. Her intellectual vanity would not tolerate that. But did Annie Sullivan quail when she taught Helen? No, she gave her a sensory experience. That guy should have heard, tasted, smelt and touched the vegetables. His mind would have all this material to work on. Annie respected Helen as a paerson, a respect which was enhanced by discipline to make sure Helen came up to or exceeded her high expectations. She certianly did not meet her with horror. Annie did have horrors of people who more obviously manifested their condition, who learnt blindism and deafism from institutional settings.

One of my great role models, John Holt, has written of his horror at this girl at a concert. She waved goodbye at the musiicans and was very concerned for her mother's approval, in such little things as not spilling. We would say she was a twelve-year-old with the mind of a six-year-old. But she did not behave like a normal six year old. You have a six-year-old therfore you know this better than I. her mother barely interacted with her in public. She had no choice. She was powerless. To think that the examples mentioned, 30 years apart, were by the age of twelve more impaired by the attitudes of well-intentioned poeple! "What was so horrifying about her was not that she was less than fully human but she was less than fully animal" But Victor and Helen had great animal vigour and liveliness which endeared them to their caregivers. victor was intelligent and had potential, even when his learning failed, we still loved him, even when Itard abandoned him.

Freakery can work for you or it can work against you. French culture celebrated primitivism - from a 21st century standpoint it is itself primitive. With Victor and Helen we got to look at whether words are the ultimate socail touchstone we most of us came to believe. With Helen we said a profound and joyful Yes, but it took a month for her to really understand the meaning of words, and give to be conversant and a responsible communicator. She got turned on at the age of 12 too - with the Frost King story. It seems when we are 12 years old, we make clear demarciations about who is human and who is not. By twelve years we expect children to be fully human, even if they are not developmentally twelve or have missed out on twelve year odl experiences. We are cruel bastards, turning on people at vulnerable stages of development. We who value intelligence and development in the pure sense ...well how high the mighty fall would be a kind way to put it.

Well, dear Jan - and I reach to you as a sister in geopolitics (and I can always do with expansions to my family!) even if we don't understand the significances of human development, I think we all can rejoice that Brian has had his borthday. May it be a good one for you all. It is now some three weeks since I made my speech, and I am disappointed to hear it is still a slow and confusing development, at least according to your perspective, and according to your speech therapist and occupational therapist - there is a reason these good people are in allied heath.

In celebration we turn full circle: Autism outside the Anglosphere

At times I wonder how the English language has meaning for its native speakers. And I definitely wonder how or why it has meaning at all. This is a tendency which is libael to become if not carefully checked linguistic apathy, lethargy and nihilism. Yes, communication does bring meaning to life.

[...]

There are many of us that are bamboozled by the more subtle signs of pervasive developmental disorders. Of course all these conditions can affect loss and grief. What I wish you to be aware of is that Autism Spectrum Disorder is a fundamentally different soical, communicative and imaginative personhood held together by a fundamentally different neurological organisation. It is this organisaiton that determines the receptiveness and expressiveness of the personhood. It modifies the toness, the forness, the withness of persons and things. Modifies, not creates or destroys. It'd be well to say that developmental delay is an incidental outcome in this personhood's adapations and reactions to their neurological organisation

There endeth the sermon.

I do suggest you make contact with Autisme Europe.

I go on to evaluate the offerings of Olga Bogdashina and Mira Rothenberg.

I hope you learnt lots and enjoyed it.

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