Wednesday, October 3, 2018
Autism: Challenges & Obstacles!
© 2012 Am Ang Zhang
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
Ode: Intimations Of Immortality From Recollections Of Early Childhood.
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.
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
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
Denial is a useful if ineffectual defence, but now we needed to get results.
It was time to have something for show.
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.
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!
From the book, The Cockroach Catcher.
Autism posts:
[1] Diagnosis of Autism Spectrum Disorder - There is a belief that Kanner’s criteria remained the strictest, though other advocates for government funding of provisions for Autistics argue otherwise. Doctors can no longer rely on “clean” data.
[2] Retts Syndrome - Andreas Rett first described the syndrome in 1965, first thought to be a severe form of Autism now known to be related to MECP2 mutation.
Tuesday, October 2, 2018
Nuremberg & Thalidomide: The Good The Bad & The Ugly.
It is not really the first time we visited a place that has a rather haunting history. St. Petersburg
Now we are starting our high school reunion on our river cruise. The journey starts at Nuremberg Nuremberg Nuremberg
Nuremberg
But Nuremberg
As they opened a new Waitrose across from my clinic, I find myself shopping there most days after work. It was one of those de-roling activity that is important after a whole day being involved in the mad of sad world of child psychiatry. John Barnes in Swiss Cottage was the first local store that was very close to the Tavistock Clinic where I trained. It was there that I saw the wooden escalator that my father reminisce about of the ones in Shanghai
One day, at one of the specially designed check outs, sat a girl on a special raised mechanical chair was a girl with arms a quarter the size of ours and a few minute fingers. Yes, a Thalidomide victim doing a proper check out job.
Yes, we tried our best not to notice and our best not to treat her any differently as we well know that that is what she would want. I raised my hat to Waitrose for treating her like any of their partners. That is how the world should be.
But I never knew that there was any link between Thalidomide and Nuremberg
Newsweek
Adding to the dark shadow over the company, it is increasingly clear that, in the immediate postwar years, a rogues’ gallery of wanted and convicted Nazis, mass murderers who had practiced their science in notorious death camps, ended up working at Grünenthal, some of them directly involved in the development of thalidomide.
What they had to offer was knowledge and skills developed in experiments that no civilized society would ever condone. It was in this company of men, indifferent to suffering and believers in a wretched philosophy that life is cheap, that thalidomide was developed and produced.
Perhaps the best known of Grünenthal’s murderous employees was Otto Ambros. He had been one of the four inventors of the nerve gas sarin. Clearly a brilliant chemist, described as charismatic, even charming, he was Hitler’s adviser on chemical warfare and had direct access to the führer—and committed crimes on a grand scale. As a senior figure in IG Farben, the giant cartel of chemical and pharmaceutical companies involved in numerous war crimes, he set up a forced labor camp at Dyhernfurth to produce nerve gases before creating the monolithic Auschwitz-Monowitz chemical factory to make synthetic rubber and oil.
In 1948 Ambros was found guilty at Nuremberg U.S.
Dr. Kelsey is honored by President John F. Kennedy in 1962. (Courtesy of FDA)
The tragedy was largely averted in the United States, with much credit due to Frances Oldham Kelsey, a medical officer at the Food and Drug Administration in Washington, who raised concerns about thalidomide before its effects were conclusively known. For a critical 19-month period, she fastidiously blocked its approval while drug company officials maligned her as a bureaucratic nitpicker.
Freedom of Speech: Truth & Thalidomide!
Case 5 – The Truth about Thalidomide Given the lack of a constitution enshrining free speech, we do need some protection against frivolous libel actions and injunctions which try to prevent the truth from being revealed. Otherwise the truth about thalidomide would never have been told.
“Thirty-eight years ago,” he wrote, “I sat through days of hearings by the Law Lords deliberating on whether I and the paper I edited were guilty of contempt in 1972-3 in campaigning for justice for the thalidomide families. All five Law Lords voted to ban publication of our report. Only a 13-11 victory in the European Court of Human Rights removed the gag order” – and thus, I add, enabled The Sunday Times to expose one of the great scandals of that time, and subsequently win compensation for the families with young children born damaged or deformed, often without legs or arms, because their mothers had taken the drug, thalidomide, which was marketed as a mild sedative that would relieve morning sickness in pregnancy. Telegraph
Luckily, the European Court eventually ruled for The Sunday Times:
“The newspaper then decided to fight the injunction on its investigation into the origins and testing of the drug. The case went right through the British legal system and up to the European Court of Human Rights, which decided that the injunction violated the right of ‘freedom of expression’. The full story of thalidomide could eventually be told in 1976, revealing that both Grünenthal (the maker) and Distillers had not met the basic testing requirements of the time.”
I mentioned thalidomide also because in 2002 Gordon Brown, the then chancellor, attempted to tax the benefits payable through the Thalidomide Trust.
Friday, September 14, 2018
NHS & The Elite: Community & Specialist Hospitals!
In Hong Kong, we do not have State funded GP services but there are State funded public hospitals where you get top quality treatments. In Singapore, public hospitals are not free but the poor that are on Social Security will have their fees waived. Singapore public hospitals are so well run that most prefer to go to them for major illnesses.
Singapore Health Care: Best Public Hospitals!
The truth is that medical tourists do not come for the
GP services
we provide, they come
for
the cutting edge medical procedures.
we provide, they come
for
the cutting edge medical procedures.
The Elite
Zebra in fact belongs to the same family as the horse (Genus Equus) but unlike the horse has never been domesticated. It is believed that the stripes in a herd is protective as many animals merge together and thus appeared larger.
There is now a new plot on the horizon: Persuade people that they only need community hospitals near them to be run by Primary Care and they may not even be doctors.
This way the punters might be tricked into not going to Hospital A&Es but Urgent Care Centres at these locals.
Really.
Punters would not be punters if they are that stupid.
No matter; as we will close A&Es and even their hospitals.
Why?
It is the one big drain on NHS spending and it cannot be controlled. We can pay GPs if they do not refer but self referrals to A&E is now the norm.
A reprint:
NHS Reform: Democracy is for the Elite! So is Health Care!
Is it really that difficult to grasp! Our democracy is for the ELITE. Why pretend? So is Health Care!
Most people in well paid jobs (including those at the GMC) have health insurance. GPs have traditionally been gatekeepers and asked for specialist help when needed. If we are honest about private insurance it is not about Primary Care, that most of us have quick access to; it is about Specialist Care, from IVF to Caesarian Section ( and there are no Nurse Specialists doing that yet), from Appendectomy to Colonic Cancer treatment (and Bare Foot doctors in the Mao era cannot do the latter either), from keyhole knee work for Cricketers to full hip-replacements, from Stents to Heart Transplants, from Anorexia Nervosa to Schizophrenia, from Trigeminal Neuralgia to Multifocal Glioma, from prostate cancer to kidney transplant and I could go on and on.China
When there are not enough specialists to go round in any country money is used to ration care.
So we are going to but in a peculiar manner as the NHS used to be state run and free. Reform is needed!!! Enter GP commissioning. If it is your GP doing the rationing it is no longer the State's problem.
Some very clever people indeed are working for the government.
Is it Conspiracy or Cockup? You decide.
Some very clever people indeed are working for the government.
Is it Conspiracy or Cockup? You decide.
But strangely they thought there is still money to be made.
The current concern for the NHS Reform is perhaps too focused on privatisation.
The main aim by some very clever people in government is that somehow there must be a way to limit health spending.
The first obvious way is to find someone that could do it without the blame coming back to the politicians who needs to worry about the next election or next job.
GP Commissioning was thought to be the answer as the blame would now be on the GPs.
Integration of Health Care
Integration of Health Care now carries a new meaning: integrated as long as it is all within the remit of Primary Care and not between Primary and Secondary Care. Yet there is only so much that Primary Care can do unless they started employing their own consultants and running there specialist hospitals. That is one way of saving money.
The other way is to refer to Any Qualified Provider, the new NHS speak for Private Providers. Better still if these are owned by the same organisations that own some of the GP practices. Believe me, it is already happening and it will spread.
How could this be done? Simple, NHS Foundation Hospitals will not stand a chance if they have to continue with the expensive and unprofitable conditions or expensive dialysis and Intensive Care that many private insurers will not touch. In the new world order, they will fail and be closed or be bought by private companies. We have the regulator called Monitor that will see to it.
Again it will not be the politician’s fault: just bad management.
The new structure of HSCB is perfectly geared towards failing FT Hospitals. Some will survive through high levels of private work for those from wealthy countries. There is only a limited number of specialists to go round in England
Which means that there will be a long waiting list for NHS patients!!!
Rationing by any other name.
All photos ©2012 Am Ang Zhang
It really does not need a genius to work out that Foundation Hospitals if they fail will be bought up by private firms.
So there are not enough Consultants and shortage creates demand and you can name your price. Consultants do not really want to waste time in consortia arguing about the price of hips or knees.
Privateers
A big portion of the NHS money will now be spent in the counting houses of the new Commissioning Offices. Gradually more and more of that money will be re-distributed to Privateers.
Those who could afford to will now get their own Health Insurance and when the Insurers refuse to cover some conditions you may have to return to the NHS. But who knows, it might just be too late then as those hospitals may no longer be there
So do you really think that hospitals are not necessary, or not necessary for the average citizen of England
What about medical training? If these hospitals are sold, who pays?
And watch out, someone, your parent, your spouse, your child and even your MP may need a Hospital Consultant one day.
Do we still have those: yes we do! See here>>>>
In London
The Maudsley Hospital
Then there is Papworth. Need I say more!!!
I know that when you visit them nowadays, these places seem to be full of: non locals. Or could it be that these are now the new locals, I doubt as you can sometimes see the lovely foreign plated cars parked outside them. If I am wrong, I do apologise.
The truth is that medical tourists come not for the GP services we provide, they come for the cutting edge medical procedures and in England
So, opening up many of these rather precious hospitals for up to 49% private will mean a severe reduction in actual medical times available to NHS patients.
That is why: the pretending is over. No, at the end of the day it will not be the medical care you can get from your GP or Noctors, it will be well trained specialists with up to date complex procedures that you or one of your relatives may need!
