Sunday, October 21, 2012

Autism: Frances Tustin & Entrenchment!


The Plough Circa 1943 ©Am Ang Zhang 1989                             

In 1943 Leo Kanner published a paper that would, with Asperger’s work a year later, form the basis of present day understanding of Autistic Spectrum Disorder. He considered five features to be diagnostic. These were: a profound lack of affective contact with other people; an anxiously obsessive desire for the preservation of sameness in the child's routines and environment; a fascination for objects, which are handled with skill in fine motor movements; mutism or a kind of language that does not seem intended for inter-personal communication; good cognitive potential shown in feats of memory or skills on performance tests, especially the Séguin form board . He also emphasized onset from birth or before 30 months.

         The observational approach to clinical diagnosis creates a problem when there is little understanding of the actual cause of the symptoms.  This is a problem for modern medicine as a whole but a good deal more so for psychiatry. Today there is a better understanding of brain physiology and biochemistry, thanks mainly to the advances in imaging techniques and nuclear medicine. Through our knowledge of neurotransmitters we are getting closer to understanding some of the most serious psychiatric conditions, but we are still a long way off.

         Any diagnosis based on symptom manifestations is likely to end up with controversies especially with the shifting of diagnostic criteria. What seemed like a straightforward set of criteria when I was training has been subjected to revision after revision.  In the beginning, diagnosing Autism based on Kanner’s strict definition was clear-cut. With subsequent changes in diagnostic criteria it became harder and harder to the point that the diagnosis essentially became a matter of opinion. To the parents, the opinion counted at first if it was from an expert, then from a well-known expert, but as time went on the opinion only counted if it matched their own. Since autism became recognized as a severe disability by many governments, the lure of special education packages and other benefits begins to blur the true picture.

         In 1966, the overall prevalence rate of autism in UK was estimated to be 4.5 per 10,000 children.  In 1979, the figure was estimated to be 20 per 10,000, when the broader Autistic Spectrum Disorder (ASD) criteria were used.  The equivalent estimate of the National Autistic Society in 1997 was at a similar level.

         According to the findings in a paper published in the Lancet in 2006, the prevalence of childhood autism in U.K. was estimated to be 116 per 10,000, but only 24.8 per 10,000 based on the narrower definition.   The researchers found that prevalence of autism and related ASDs (autistic spectrum disorder) was substantially greater than previously recognised.

         The Centre for Disease Control and Prevention (CDC) recently (February 2007) released new data on ASDs from multiple communities in the United States Overall, the 2000 and 2002 studies found average prevalence rates of 66 to 67 per 10,000 eight-year olds.

What has caused this marked increase?  Could the increase be due to better ascertainment, broadening diagnostic criteria, or increased incidence? 

         In the spring of 1975 I found myself in a psychotherapy supervision session dedicated entirely to autism and attended by all trainees in the centre.

         The supervisor, Frances Tustin, wore a head of thick pure white hair. Very short and of rather solid build, she used to wear only trousers, which seemed to be the only sensible wear for a child psychotherapist, and a very simple pinafore. She spoke with gesticulating arms in front of her. She was basically a Kleinian. Like many of them, I think she adapted. She must have been in her mid 60s and by then and for a long time her patients were mostly severely autistic children, the ones most people would gladly send to some god-forsaken place on the other side of the planet, at great expense to the local authority to ease their own guilt of not being able to offer much locally. She was thus naturally cuddly – cuddly enough to counter the world’s most “un-cuddly”, the “autists”.  I have no doubt she cuddled many of them - those who became frightened as she led them session after session through the dark underworld of their closed and rather terrifying mind. Nor have I any doubt that if she needed to break rules she would. After all, offering psychotherapy to autistic children was rule breaking in itself.

         Many of her patients were at the High Wick hospital, a unit set up just for autistic children. People think a race is now on to decipher the brains of autists. All I can say is that the race was on then for perhaps a different aspect of the brain, and as long as we have autists the race continues.

         It was not until some years later that I realised the significance of Tustin’s influence, from the way she walked to the way she smiled. What is important is that she taught us not to be afraid. She was not afraid to challenge conventional views. She was not afraid because she did not think autism was such a terrible hopeless condition. She was therefore able to try all kinds of little tricks. She never went along completely with the tight defences of these little “autists”. She got them to know and love her and then she would begin to dismantle their defences so that they could begin to adjust faster to a changing environment, namely to cope with life. She really was the pioneer of therapies that build in step-by-step challenges for these children. It is a principle that can indeed be applied to other psychiatric conditions such as anorexia, other eating disorders and addiction. Through therapy these children learn to laugh at their own silliness. They learn to cope with little frustrations and modify their demands when they find the therapist not giving in to them. Being afraid of one’s child, whether normal or otherwise, is not a good idea. Strangely, many mothers found it hard to accept when their little “autist” changed.

         Tustin’s other great ability was her innate talent of simplifying things. Some of the greatest teachers I have met had the ability to use the simplest language to explain the most complex things. By the late 70s most others seemed to revel at the use of complex words to throw us simple folks off balance. Not so our supervisor.

         Once in Paris I was in the presence of many eminent psychiatrists who were all deep into psychotherapy. I mentioned a few names - no real response. Then in another bit of conversation I mentioned casually that I had about two and a half years of weekly supervision from Frances Tustin. Everybody suddenly wanted to talk with me to find out more. That was the year 2000.

         When I eventually left the Tavistock and became a Senior Registrar, I had the good fortune of working in a set-up for children and parents with three inpatient units. One unit was for the admission of the middle age group children of age nine to fourteen. Another unit was for the admission of, wait for this, whole families. The last unit, named The Pavillion, was dedicated to inpatient work with autistic children.

         It was at The Pavillion that I first formulated my own view on entrenchment.
         A mother was shocked on a lunch time visit to find her little Gerry eating peas.
         “Darling, I thought you didn’t like peas.”
         “I like them now.” 
         Mother, now finding it difficult to save face, turned to one of the nurses and said, “Honest – he would be sick.”
         “He will be fine, he has been having peas for days,” said the nurse.
         “These are good,” the autist added, without even looking up at mum.
         Entrenchment is a trap into which so many parents can fall.  They do not need an autistic child. The healthier children try to break out and we have rebelliousness.  Others succumb and we have mental illness.
         This is not the place to argue about the pros and cons of admitting autistic children as inpatients. The pea eating episode demonstrated to me the great value of inpatient observation. Many see separating the child from the family as cruel and yet I have seen many valuable changes in these children and their families that could not have been achieved by any other way.
              From the book, The Cockroach Catcher.   Chapter 16  Autism and Entrenchment


 Autism: Challenges & Obstacles!

Anthony

      One day a referral came of a boy called Anthony Wordsworth.  He had just turned three.
      “You will like Mrs Wordsworth.”  No reason was given. “Mr Wordsworth will probably not come to see you as he has a very important job in the City.  Anthony is such a handsome boy, a bit quiet, and I think you will like him too.”

      The Wordsworths lived in one of these big houses and Mrs Wordsworth looked very young for a mother with two children, the older one being nine. I marvelled some years later how with all the hard work her two children put her through she still managed to look that young. The wonders of modern make-up together with smart dresses might have deceived me.

      Anthony was truly autistic. At that time one of my juniors had just returned to work with me after having her twins.  She sat through the first session.
      She said to me afterwards, “I thought they did not make Kanner’s classics anymore.” Anthony was a Kanner’s Classic. Leo Kanner first described the classical autistic child in 1943 and there had not been a better description since. Not many children have all the classical symptoms, but one finds the diagnosis of Autistic Spectrum Disorder (ASD) more and more common place[1].
      I said, “Yes, even down to the good looks.” 

      I often wondered if our creator really has such a sense of humour or is everything just chance.

      One could not but feel sorry for the mother.  Later I found out that she came knowing that autism would be my diagnosis, and if I had come to anything different, I probably would have never seen her or Anthony again.
      She knew of the diagnosis from very tragic personal experience. Her own brother was diagnosed such in London by our very eminent Professor who was the world’s authority on autism.
      In other words, she had lived, breathed and dreamed autism all her life and now her worst nightmare was realised. Her own child had turned out to be autistic like her own brother. 

      Perhaps her years of looking after her brother had prepared her for this day. Perhaps our creator made sure that for those who were going to have difficult children, they were made tough enough. 

      Anthony’s older brother was smart and clever. She felt good then that perhaps genetics was not at play, and her worst fear was unfounded.

      I was once consulted by a grandmother on a very tragic situation. She had two daughters. One was severely autistic, and the other was very intelligent and a high achiever. The latter became an academic, married and received the best genetic counselling from the same university where she was a professor. Minimal chance, she was told. She went ahead and the first child was subsequently diagnosed as suffering from Retts Syndrome[2].  She was not really seeking any second opinion but wanted to know if Retts and Autism were the same.  This case reminded me of the old Yiddish saying “Men tracht un Got lacht” – If you want to make God laugh, tell him your plans.

      Anthony’s mother went on to tell me she was going to take matters into her own hands because she would not want her son to deteriorate like her own brother, who was thirty five then and living in an institution. 

      “Mrs Wordsworth, I belong to that small group of doctors who believe that the brain is really capable of a good deal more. But we have to give it the right input.” 

      This principle has been applied to the treatment of autism over the last fifteen years and the results are really quite exciting. We do not pretend to know the cause or causes of autism but I have been with some great pioneer workers and I believe that the old thinking that things cannot change is not entirely true.

      She started crying and Anthony came towards her.

      Even with the best breeding there was only so much one could hold back.
      It was a moving sight, more because Anthony moved towards mum. What a positive sign.

      “I would like to arrange for Anthony to see the same Professor that saw your brother. This is not because I do not trust my own diagnosis, but I think it may be what you would like but dare not request. It would be good for our future work together if you do go and see him.

      “Before the appointment which could be a while, there is something you can start if you are not doing already. Do not stop talking to Anthony. Give him running commentaries on what you are doing even if it is about tidying the place, getting his dinner or doing his laundry.”

      “Don’t wait for his response,” I emphasized.

      Many new parents tend to parent by responding to cues given to them. There is nothing wrong with that. We talk to our kids when they talk to us and we leave them alone if they want to play on their own. Sometimes parents insist that quiet play is actually good for their children when they themselves want some peace and quiet.

      With autistic children one may have to wait a very long time for those cues and they may never come.

      “To be honest, I have been doing quite a bit of that, but I was not sure if it was right or wrong and I never dare tell anyone, not even my husband.”

      It is always that much better to suggest something that a parent is already doing. First you are no longer instructing her and second you are more likely to succeed. She had been using her instinct and using it well. 
      She cried even more and told my secretary later that she was more moved because I seemed to know what she wanted and I saved her the embarrassment of having to ask me herself. She was planning to pluck up courage to ask me for a referral to the Professor towards the end of the session. It was not so much that she doubted my diagnosis but that she thought the Professor needed to know that there were now two cases in her family.

      Mrs Wordsworth did get her appointment pretty quickly. No surprises. The diagnosis was confirmed. The Professor thought some of my suggestions seemed interesting enough and Anthony would be best served attending the clinic locally. He was grateful for the update on her brother’s family history. He thought that Anthony’s major long term handicap would probably be his speech.

      With the Professor’s blessing, we could now start.

      We were aiming for very small changes but the feed would come from the parents and I wanted to get her husband involved if possible.
      “I told him everything after our first meeting. It’s a good job you referred us to London. I think he will be upset for a while but he will come round.”

      Denial is a useful if ineffectual defence, but now we needed to get results.   

      It was time to have something for show.
      “Do you think Anthony will have a speech impediment or handicap in that area?”
      “You’ve heard the Professor but we are not going to stop doing things just because problem was predicted. The best doctors do not mind being proved wrong now and again.”
      Mother produced a video tape.  A recording of a 90-minute period of her at home with Anthony.
      “At this rate he will speak before three and a half, don’t you think?” I joked.
      “Like my brother you mean.”  She has already told me that her brother had a serious speech problem.
      At three years and four months Anthony spoke. He did not just speak. He was in full sentences.
      I said to mother, you have delivered.

      Father came to see me the following session. I listened and picked out as many positive aspects as I could and encouraged him to just get on the floor and play with him. It was easy for me as I was already on the floor helping Anthony sort out a complex rail system that we had just acquired. 

      In our work, you sometimes just have to have fun. 

      One little boy once observed, “Do you live here, Dr Zhang? It must be fun, with so many toys to play with.”

      We worked on entrenchment and we worked on expectation. We also ventured into something newer – putting challenges and obstacles through play into Anthony’s life.

      Then we tried something even more daring – introducing imagination.



Steven

          About eight months after first seeing Anthony I had another full blown autism case referred to me at a different clinic.

          Steven was the younger of two brothers. His older brother had been a bit of a model child who never gave mother any trouble. Father was a pilot. Mother used to fly but had now switched to ground work. They had help at home.

          Mother realised that there was trouble when she found that Steven was counting lamp posts or rather reading the numbers on lamp posts. If for any reason she deviated from his normal route he would become very upset. Speech was otherwise minimal but he could read numbers from an early age, too early for mother to remember when.  One day he was counting as he was piling up building blocks, one of these early learning ones with alphabets on them.  He counted beyond twenty. But not much of anything else, no interest in colour, only numbers.

          He liked lining up his brother’s Dinky  cars. The main enjoyment was in the counting. One day the parents realised that it was the way the two brothers communicated and they felt his brother was responsible for helping him with the counting.

          But then reading the numbers – do we have a genius or what?

          The answer was we had a boy who suffered from autism.

          I tried to be frank and open with the parents, but I was probably a bit too frank for them. Both parents admitted later to the initial shock but felt that because I put it so confidently they might as well accept it. They said it would have been worse if I had suggested some tests to stall the time only to give them the diagnosis a week or two later. Those two weeks of “is he, is he not?” would have been more damaging.

          What helped them was my positive attitude towards the future and they could not wait to get started.

          One of Steven’s problems was coping with change and mother often had to endure two to three hours of crying until he fell asleep from the exhaustion, only to have him wake up two hour later to resume the crying. 

          By then I had developed various strategies and tactics with which I could bring the parents on board. Steven’s parents were exceptional, and they tried to come to appointments together, changing appointments if they clash with his flight schedule.

          We had been working hard on imaginary things – of fake cups of tea that was too hot or too sweet; of food that burnt the baby; and of the hurt when a child fell.  He was beginning to buy into a lot of that.
          Coming to the clinic still posed some problems for Steven. He found it difficult that the doctor needed to see someone else.  I was certainly responsible for his reluctance to leave. We had such fun together.
          One day both parents arrived with big grins on their face. They told my secretary Marjorie that I had to wait till the end of the session but they hoped it would work.
          I could hardly wait.
          “Steven, five minutes,” mother warned him as per usual practice.
          No response.
          “Two minutes.”
          No response.
          The suspense was killing me.
          “One minute.”
          Steven went over to his school bag. He took out something. I could not see what it was as it was imaginary. How stupid of me.
He put in two batteries. I could not see those either.
          With his other hand, he drew a big squarish thing in front of him that would have included most of me and my background. He aimed his thing and pressed.
          “Swish-swosh-swish .”
          “Ready. Mummy and daddy.”
          Steven had turned the session into a TV episode. He was now in control with his remote control. I was basically switched off.
          Two very proud parents walked off very swiftly with Steven in tow.
          “See you next time Marjorie,” Steven waved to my secretary. She approved. No crying from Steven.
          I was left standing there shell shocked.
          They have done it!




Autism: Somalis in Minnesota and Sunshine
Autism, the Brain and Tiger Woods
Autism and Money


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