Q: Welcome Dr Sacks to the Internet Conference. You’re very well known through your work in the field of neurology and also with the public through your books, two of which, films have been based upon. ‘At First Sight’ and ‘Awakenings’. For those who may not yet have heard about you, could you say who you are and a little of your background?

OLIVER SACKS: Well, I’m Oliver Sacks and I’m a Londoner. I was born in London in 1933 and came to the States in 1960 and I’ve been here ever since. I was drawn to Neurology very early I think it was partly because my Parents were trained in neurology and in 1966 I encountered the astonishing patients whom I wrote about and later depicted in Awakenings. I think I’ve always been interested in extreme conditions, which challenge people’s resilience and humanity and, in a sense, force them to create a life and an identity upon an unusual basis. It is certainly one of the things, which has brought me to see people with Tourette’s syndrome, with autism, among some other conditions.

Yes, much of your work has been about uncovering the mysterious. How far can we go in understanding the many complex interactions that make up the human brain?

That’s a big question. The human brain and mind are unimaginably complex and until recently, I think there was little understanding of phenomena much above the reflex level. Now we are sort of looking at things like visual perception - now there’s something like 40 or 50 different systems say, which are involved in analysing colour, orientation, depth, movement all sorts of other parameters with visual perception. The image on the retina is just the beginning of all this. What is so difficult to understand, is how these 40 or 50 different systems are all orchestrated together seamlessly, to give us our picture of the world. We see the world as coloured, moving, significant, interesting, our attention darts around and we are really very ignorant at this point of the nature of consciousness and attention and what sort of brain processes could possibly be involved. But it would certainly involve the synchronisation of many, many systems in all parts of the brain.

Autism is still a puzzling disorder, with theories ranging from differences in brain composition and development to auto-immune theories. How do you view the different strands of research? Will there be a single unifying cause discovered, or do you think that autism manifests in different ways and has a number of sub-groups?

Well, as start, prior to 1960 on the whole autism was not seen as an organic condition at all. And certainly, Bettleheim and others had thought that it was a consequence of bad parenting, in particular, sort of cold, refrigerator mothers. I think that a whole generation of parents was made to feel guilty and uncomfortable because of this. It was only in the 1960’s, that the feeling changed somewhat. This was partly because of the german measles epidemic at that time, and it was found that the children of mothers who had had german measles in the first semester, could have various forms of brain damage and could be blind or deaf or retarded or autistic or all of the above. This very strongly suggested a biological origin for autism. Obviously, whatever biological determinants are there, these will then interact with all sorts of human determinants. A mother’s responses to her child will partly be based on the way the child reacts; the interplay has to start on the first day of life. And it may be that the interaction with an autistic child goes wrong or is peculiar from the first day of life. This has certainly been suggested, even though autism is usually only recognised in the second year of life. There are more and more suggestions that there is something there in the first year of life.

Right from the start, somewhat different forms or manifestations of autism were described, in fact at exactly the same time with Kanner and Asperger, Kanner describing a form of infantile autism in which those effected, really never achieved very good language and might be imprisoned in stereotypies … it is interesting that both Kanner and Asperger, in different countries, provided descriptions which are so similar in a way and both of them converged on the word autism to deliver the essential aloneness. Autism had previously been used as a word in relation to schizophrenia, as a manifestation of schizophrenia. It was not suggested that the infantile autism which Kanner described was a form of schizophrenia, yet there was this aloneness. Although it was felt by both of them that the aloneness was not on the basis of fear or defense or withdrawal, but on the basis of some incapacity to understand other’s feelings, to express their own feelings and to know where they stood in a world of feeling. In the patients who Kanner described, language was never adequately achieved and people tended to remain fairly disabled. In the form that Asperger described, language and high intelligence were certainly possible but it might be a very different sort of life. But whether the Kanner form and the Asperger form are separate conditions or whether they are parts of a continuum, one doesn’t know. I have the impression of what we call autism, is very heterogeneous, both in its origin and its evolvement.

There appears to be a growing incidence of autism in many countries, with huge percentage increases being noted over the last 10 years in the USA. What is your belief on this increase?

I don’t know whether it’s a fair comparison, but I would think of the supposed increase in say Tourette’s syndrome as a parallel. In 1970 or the late 60’s for example, it was considered that Tourette’s syndrome was very rare, with the incidence of perhaps one in a million after seeing a patient with Tourette’s myself, on the streets of New York, and then seeing three more the next day and two more the day after, I wondered if I’d been somehow not seeing these people. And I thought I’ve seen five people in two days, this must be a thousand times commoner. We now realise that Tourette’s is a thousand times commoner, it’s incidence, roughly speaking is one in a thousand not one in a million. It has not become commoner, we’ve simply become more aware of it. I would suspect something of the sort may be the case with autism. Perhaps it wasn’t recognised or not talked about. Twenty-five years ago, when I was working in a state hospital in New York, people with autism were not clearly differentiated from people with retardation or people with schizophrenia or other conditions. I think it’s probably our clearer perception of what constitutes autism.

You’ve actually worked with very many able individuals with autism, why do you think that different therapies, for example art therapy and music therapy have such different effects on people with autism?

Firstly, people with autism, despite their autism or in addition to their autism or beyond their autism, are as various as any other people. Music perhaps, will affect some people and not affect others. Some people with autism are visually gifted, and not others. Some are mathematically gifted and not others. I think one has to find the area which stimulates and excites them. I think that the right therapy, which might become the right occupation for someone with autism as with any of us, depends on their particular interests or abilities. For example I’m in a rather botanical mood at the moment, I’m wearing a Kew Gardens T-shirt and I know that at one time at least, Kew Gardens employed two or three young autistic people who had a talent and a love for botanical drawing. So botanical drawing was for them a therapy, a vocation, a satisfaction or whatever. A skill doesn’t always correspond to a feeling. I know you’ve interviewed Temple Grandin, I’m not sure whether I should say this or not, she may have said it herself, Temple is very musical in a sense, she has a very good musical memory, a very good, clear grasp of musical form, she has absolute pitch, she is intrigued by music, but I don’t know if it arouses much feeling for her. One Christmas she was here, and told me that she would be at a concert. A Bach concert, where two of a three part inventions… would be played. She wondered if Bach could have written any four or five part inventions. That was an interesting question and I said “Did you enjoy the concert?” and she said she found him very, very ingenious, but she wasn’t sure if she’d enjoyed it. Now this being so, I’m not sure that music would be therapeutic for Temple. It may sort of challenge her, but it doesn’t please her much, whereas clearly being with animals and being in touch with their feelings and the way they think, is vitally important for her. It becomes both her therapy and her profession.

Do you think there are advantages for people with autism and Asperger syndrome in being alienated from their emotions?

I think there are certain strengths which can go with the autistic syndromes which can confer advantage. I think autistic people may have a great power of focusing which can show itself from an early age. They tend to develop very intense passions, sometimes called obsessions, but I don’t feel one has to use a pathologising word like this. Whether the passion has to do with astronomy, or as with Sherlock Holmes who was perhaps autistic, identifying the ash from 145 different sorts of cigar. This intense focused interest can be a real strength. I think that the relative absence of emotional involvement may sometimes be an advantage. Temple, again, feels that she can be a particularly good umpire of scientific papers, as she feels she has no particular axes to grind, no biases and no prejudices.

I think I can try and answer your question, by reference to a very great scientist, namely Cavendish who lived in the 18th century. Cavendish weighed the earth, he discovered the composition of water, he was the first to make hydrogen - a major, major figure. The Cavendish Laboratories in Cambridge, are named after him, but he was a very unusual man. I’ve got here, part of an 1850-ish biography of Cavendish. I’m going to read a little bit to you, because I think he sounds like an example of an autistic genius:

“He did not love, he did not hate, he did not hope, he did not fear, he did not worship as others do. He was almost passionless, all that was needed for application more than the pure intellect and that would require the exercise of fancy imagination, affection or faith was distasteful to Cavendish. An intellectual head, thinking. A pair of wonderfully acute eyes, observing and a pair of very skillful hands, experimenting or recording are all that I realise in reading his memorials. His brain seems to have been but a calculating engine, his eyes inlets of vision not fountains of tears. His hands, instruments of manipulation which never trembled with emotion. His heart, only an anatomical organ necessary for the circulation of the blood. He is more to be wondered at, than blamed. Cavendish did not stand aloof from other men in a proud or supercilious spirit refusing to count from his fellows. He felt himself separated from them by a great gulf which neither they, nor he could bridge over and across which it was vain to stretch hands or exchange greetings. He was like a deaf mute, sitting apart from a circle, whose looks and gestures show that they utterly listening to music and eloquence … Wisely, therefore, he dwelt apart and bidding the world farewell took the self-imposed views of a scientific anchorite, and like the monks of old, shut himself up within his cell which was a kingdom sufficient for him and from its narrow window he saw as much of the universe as he cared to see. He was one of the benefactors of his race. He was patiently teaching and serving mankind whilst they were shrinking from his coldness or his peculiarities. He was not a poet, a priest or a prophet. Only a cold clear intelligence laying down pure, white light which brightened everything on which it fell but warmed nothing. A star of at least the second, if not of the first magnitude in the intellectual firmament.”

I’ve never seen this quote, and this is a very rare book for my office, a biography. But, there’s much more of the same, I have one very, very astounding picture. The biographer, who was a physician, wonders whether this was an innate disposition of Cavendish or whether it was due to early bereavement, his mother died when he was two and he was probably brought up by a rather absentee father. But it’s that sort of remarkable strength or efficiencies that are combined here - so in answer to your question, this is it.

You’ve written two books which include cases of your clients on the autistic spectrum. The man who mistook his wife for a hat and an anthropologist on Mars. In these books you describe their worlds in great detail enabling the reader to gain some kind of understanding of what it must be like. Do you think that people who are neurologically typical, should be more aware of the needs of those with autism and change their behaviour to accommodate those needs.

Firstly, I’m not quite sure what typical or normal means, and I think there are a great many modes of being human which can be rich and full, even though they are very different. This is often brought up by deaf people, who in fact like to distinguish deaf with a small ‘d’ which means hearing-impaired from deaf with a large ‘D’ which means really belonging to an ethnic group, a linguistic and cultural group, which has its own perspective, sensibilities, community, culture, language. So that deaf people, especially if they are native signers and are part of the deaf community, do not feel defective or pathological, but they feel different. They also feel that they are complete in themselves. I think autistic people, especially gifted autistic people, may sometimes feel the same. Temple herself would say “if I could snap my fingers and be non-autistic, I wouldn’t, because autism and being autistic is part of the way I am”. Now with Cavendish, whom I spoke of, it was very well recognised by his contemporaries, that they had to adapt to him. For example, he could not bear being looked at directly, he couldn’t bear being talked to directly, if they turned to him, of course he might feel on him, with a question, he would shrink away. It was understood very well that one had to give an animated conversation with someone else, but if a subject interested Cavendish, he would then be drawn towards the conversation and come into it. Cavendish couldn’t bear society, he could only sometimes bear interactions with a single person. One has to be sensitive with everyone, you have to adapt to everyone. All human relationships are about mutual adaptation and I don’t know how conscious this is, I think empathy teaches one to adapt. I think adaptation is very important. But certainly with autistic people, one is dealing with, in a sense, another variety or another species of human being. They may be very intelligent and very sensitive and very valid in their own way, and yet it may be a different way. I think we do have to adapt somewhat, as they do. It was said long ago by Diderot of the 18th century that the problem for blind people is not being blind, it’s not seeing people. In other words, they have to adapt to the seeing world. Certainly for people who are totally colour blind, of whom I’ve seen a good many, the problem is having to learn a vocabulary of colour, that which means absolutely nothing to them. They could get along perfectly well without it. To some extent, autistic people have to learn the vocabulary of what it’s like to be us. I think we also have to learn their vocabulary and I think best way to learn about deaf people is to have a deaf neighbour, deaf friend or deaf relative. Similarly, the best way to learn about autism is to find yourself in some sort of relationship with an autistic person. I will say that I think I have some autistic colleagues, whether they would think I’m one of their autistic colleagues or not I don’t know. Yes, one adapts all the while. Hopefully

Well Dr Sacks, thank you very much.

Thank you.