Collections Autism
Challenges & Entrenchment
It was early on in my training that I realised that
parenting is often if shaped by the infant.
Cues from the infant and responses from the parents especially mother in
many cases will help shape the child to be what it will be. Much disturbance is seen in mother-infant
coupling when mother for what ever reason insists on basically bull-dosing
through a rigid way of upbringing the infant.
This is one of the reasons why despite popularities, parental guidelines
do not work that well except in situations when the mother realised the need to
follow her instinct.
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
Once in
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.
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.
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 do 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
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 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
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!
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