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“Healing Autism: No Finer a Cause on the Planet”
December 27, 2001 News Morgue Search www.feat.org/search/news.asp
· Sent to ‘Practice School’
· Special School or “Cuckoos Nest”?
· Scottish Dungeons
· On A 10 Year Old’s Tragic Event
Sent to ‘Practice School’
Program at Jewish General Hospital helps out problem students
[By Karen Seidman kseidman@thegazette.southam.ca. in the Montreal Gazette. Letter to follow.]
They call it a “quiet” room, but it’s where the noisiest, angriest
students at this special school wind up: in a locked room with a tiny window
where they can work out their rage before getting on with their studies.
It’s a chilling sight in this unusual school that operates in the upper reaches of the Jewish General Hospital.
Nine-year-old Alex recently had a “bad day” and spent time in the
quiet room. “I get angry when I get frustrated. But I’m really concentrating
on my work, and this school is helping me.”
Run jointly by the hospital and the English Montreal School Board, the
school helps about 80 children with such serious problems - among them, depression, autism and obsessive-compulsive and attention-deficit disorders - that they cannot attend regular classes.
Jayme, 9, needs help managing his anger. He was hanging out in parks,
getting into fights, and wearing gang-style clothes. He’s made a lot of progress since joining the hospital program.
“When people come after me now, I ignore them,” the worldly youngster
said. “I try to avoid the park and stay out of trouble.”
Most students benefit from the program; after six months to a year,
they can function in a regular classroom.
“We don’t believe in keeping kids out of (regular) school unless it’s
necessary,” said Dr. Jaswant Guzder, the psychiatrist who runs the school.
“Our role is to help the family function better and know how to manage their
child.”
Family therapy is a program prerequisite. But the focus in the classrooms - small at about seven students - is on behaviour. Each day students review a check list with their teacher:
· Homework done?
· Raised your hand?
· Work down quietly?
When the teacher praises good behaviour, the students smile with accomplishment.
“Are we in a real school?” one teacher asked her class.
“No,” the students responded. “It’s a hospital.”
“That’s right,” the teacher said. “It’s a practice school. The goal is
to take your good behaviour to an outside school.”
A note on the blackboard reads: “Tomorrow is Wednesday; we will be at
our outside school.” Most students spend four days at the hospital and one
day at their regular school, practicing their acquired behaviour skills.
“I know that I have to work on not fidgeting, because I can get wild
very easily,” said Matthew, a 10-year-old eager to return to regular school
full time. “I have to try not to annoy people by saying the same things over
and over.”
“These are kids who are used to a lot of negative attention,” said
teacher Eva Shrier. “We catch them being good and we build their self-esteem. Many have had years of academic failure.”
Teacher Judy Fish said the school is often a godsend for overwhelmed
parents. “They are usually so happy to know that there is a place their child can come for help.”
* * *
Special School or “Cuckoos Nest”?
Letter to Montreal Gazette in Response to Above Article
[See the article following this post, which describes care at the other end of the spectrum for adult autistic children in the UK.]
Dear Editor,
In the article “Sent to practice school Program at Jewish General
Hospital helps out problem students”, Dec. 27, the teacher is quoted as
telling her problem behaviour students that they are not in school, but in a
hospital. I believe it to be a mistake to characterize anti-social
behaviour as an illness requiring hospitalization. When it comes to
treating disorderly citizens, psychiatry does not have a good record when
working in collaboration with governments and their agencies. All too often
dissenters are labeled mentally defective by more repressive governments and
have been routinely forced hospitalized as a means of repression. The book
“One Flew Over the Cuckoo’s Nest” comes to mind where innocent social misfits are imprisoned in a mental hospital ward and are abused into submission by the use of medical technology.
Granted that this program is for children and clearly this is not a
similar case of state psychiatric abuse. The protective shield of parental
involvement is especially welcomed to see, as well. But let’s not make it a
habit of putting people, including children, with behaviour problems in hospitals unless they are truly so ill and their diagnosis requires it.
· Hamilton Dexter detroit@been-there.com
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* * *
Scottish Dungeons
[This letter comes from a person who describes his/herself as “a parent in London, England, UK.” He writes:
“I received the following letter from a Scottish friend who is working
very hard to help people with autism/Asperger’s syndrome, whose families are
not finding the “system” helpful.”
Mental health laws, family laws vary from state to state, country to
country. In California, for example, parents can retain custody of their
“dependent adult” offspring and in control of any care and treatment.
However, parents then must foot the bill for this care, which needs to
continue after their own deaths (which only a small percentage of parents
will be able to do.)
In Scotland and the UK, the subjects have socialized medicine, which
unfortunately leaves the caregivers responsible to the bureaucracy who signs
their checks and not the patients who merely pay the taxes.
FEAT is not able to fact check the statements and charges made in this
letter. We are also unable to investigate and report the “other side’s”
version of these accounts. But the accounts are compelling, nonetheless. So
with that in mind, here is the text. –LS]
Tuesday, December 18, 2001
Eighteen months ago my only knowledge of Autism was restricted to
seeing clients walking down the street near Struan House, part of the
Scottish Society for Autism’s facilities. During a period as a constituency
researcher for a Member of the Scottish Parliament I was introduced to a
family who complained that although their 24 year old son had been diagnosed
as having Asperger’s Syndrome by three different professionals over a four
year period, he was detained under a Court order and being treated as a schizophrenic in a locked Ward.
Since then (the past 18 months) I have had a crash course on Autism
and the damage that current “medical treatment” is causing both patients and
families. I now support the above boy and family and a number of other
families in similar positions. Treatment of other patients in psychiatric
wards appears to be not much better.
In the first case the son came through normal education system and won
a virtuosi award which got him into a School of Art. At the time his tutors
said that one day his work would hang in the Tate Gallery in London. Now he
has the drawing skills of a three year old. He had developmental problems
throughout his years but these were ignored by the authorities who were not
aware of such a condition as Autism. While at the School of Art (Jan, 1995)
he went on an organised trip to Paris where he was assaulted in the street
by strangers. On arriving back in Scotland he was so distressed he tried to
run the 50 miles home and was found collapsed in the street.
Once home the local doctor refused to turn out during the night. Long
story short he ended up in hospital as a voluntary patient and the feast of
drugs began. In 1995, 1998 and 1999 he was diagnosed as having Asperger’s
Syndrome by two different psychiatrists and a psychologist. Even with this
diagnoses, the drug treatment continued. The answer to the parents questions
were “your son has a psychosis and we will deal with that first then when
that is under control we will address the Autism”. In Jan, 2001, following
hard lobbying by the parents, a Professor of Psychiatry was brought in to
examine the son. He diagnosed classic infantile autism, a big regression.
The son continues to be in hospital, detained under a Court order obtained
by the Health Authority. His mental health continues to deteriorate and he
has severe physical deformities and side effects now as a result of the
drugs. TD and everything else associated with long term use and abuse of
benzodiazepines, neuroleptics and all the other drugs have taken their toll
on him.
A care in the home package failed after 10 days as the staff sent to
look after him had no training whatsoever in Autism. One was a 21 year old
newly graduated with a degree in Religious Instruction! The parents continue
to pray that their son will suffer no more and be allowed home.
Because of his Autism he confines himself to his room most of the day,
venturing out for food and the forced queuing for his drugs. It is common
practice to wake him at 10 pm to get up and walk to the staff room to be
given his drugs. He is very agitated about getting home. He has been told by
staff that will not happen. He is given Lorazepam when he “gets out of hand”
i.e. he shows frustration at his situation. With this he is “drunk” for a
few hours then sleeps for 8 to 10 hours before waking with what can only be
described as a “hang over”. Being in this mood he is liable to be given
another dose within 48 hours of the previous.
A side effect of the drugs is incontinence. Often his parents find him
in wet clothing and bedding. Staff generally ignore it and leave the
parents to change him and bag soiled clothing. On one occasion a nurse made
the son walk over ½ mile to and from the X-ray unit through a public car
park, across a main road and through another hospital in urinated clothing.
General nursing care has improved recently following a complaint to high
places and a Saturday evening visit to the ward by “a very high manager”!
As he is now 25 years, he is classed as an adult and the parents have
no say whatsoever in his care and treatment. He has recently been allowed to
“escape” from the ward. On one occasion he was away for over three hours and
was found by the police trying to walk home. He socks on but no shoes and
very little clothing. He had hypothermia and a very large sore on his foot
for which he was given a double combination dose of synthetic penicillin’s
for three weeks. A TV documentary about such patients was made by the BBC
but was blocked from being shown by a Court Order obtained by the Hospital
Trust looking after him. The Court battles proceed with no sign of help for
the boy.
His current “consultant” states he does not believe in the labels
“Autism” and “Asperger’s Syndrome”. The boy is schizophrenic and that his
what he will treat! Second opinions have been refused as has the family
request for checks on his liver condition and the possibility of mal
absorption of nutrients and drugs. Requests for investigations in to various
complaints (one with 65 itemised points) have been refused.
In another case a boy was diagnosed at the age of 15 as having
Asperger’s Syndrome. Following an incident when he got frustrated, he was
admitted to a psychiatric ward. He was immediately put on Clozapine and
other drugs. His mother noticed his condition was deteriorating and asked
questions of the staff. She got nowhere. The mother and I met with the
psychiatrist and the charge nurse from the ward. They admitted that they had
no knowledge of Autism and only dealt with schizophrenics. A second opinion
form a well know specialist was refused. The boy (now 18) started having
side effects that resembled minor epileptic attacks. The ward staff said it
was anxiety attacks and the boy was of the impression they were blaming his
mother. While out walking with his mother he took an attack. She took him
to the nearest hospital where the examination went fine until they checked
computer records and found he was a voluntary patient in the hospital. They
stopped the examination and said he was only having an anxiety attack! The
hospital then threatened to apply to the Court for an order to detain him.
That threat was later withdrawn but remains a possibility. The boy is still
on the same drugs and having the side effects. He remains in hospital, as
the authorities will not make provision for him to live at home.
In a third case a 31 year old Asperger’s Syndrome who has lived at
home with his parents all his life apart from very short periods in hospital
almost for respite care, got depressed over the amount of money he lost on
scratch cards. The local doctor could not lift the depression and the son
ended up in a psychiatric ward detained under a Court Order. He was
immediately put on depot injections and suffered sever side effects. The
parents wrote to the psychiatrist asking a large and wide range of
questions. The psychiatrist arrived at the family home with two others and
produced a tape recorder. He ignored the father and attempted to interview
the mother. Eventually the father asked him to leave. The son continues to
get depot injections. Staff will not accept that he will not take whole
tablets but will take syrups or crushed tablets with some jam. An appeal
against the detention was unsuccessful in the Sheriff Court when the hospital introduced dodgy information towards the end of the case.
Towards the end of the time span of the depot injection the boy
returns towards normal. Last week he refuse his depot injection and his
mother so a marked improvement in his condition. Since then a second
opinion has been called in and the boy “given” a depot injection. He is
suffering severe side effects which are ignored by ward staff. He is now
being accused of acquiring a knife within the ward and threatening suicide,
a thing he has never done in the past. He is detained in a hospital almost
in accessible to his parents who now only seem him twice a week.. The son
has said he only got the knife to peel his orange. Staff are unable to give
a description of the knife or explain how he got it! His condition is being
further aggravated by him being given access to newspaper reports about the
different wars in the world.
In all case the parents felt that staff became hostile towards them,
the more they questioned the treatment. In one case staff made a complaint
of assault against the mother. This was reduced to verbal abuse when the
parents challenged the allegation. Parents are denied information on
treatment and in all cases are told that son will not be allowed home but
will go in to care either in an institution or shared tenancies in the
community. Behaviour of staff indicates a policy of trying to upset the
parents to the point that they will stop visiting. In all case while pushing
the patients rights they are ignoring their needs and socially excluding the
family. Recently while on a regular visit to one of my “boys” with a friend
( a former nurse) I was challenged by a member of staff and asked who I was.
Following a little “discussion” in a side room our visit was allowed. I
fully expect to be barred from visiting on my next trip to see him, such is
the hold “consultant” psychiatrists hold. They are little Gods in white coats.
Unfortunately this type of behaviour happens towards non-autistic patients and their families in psychiatric wards.
My advice to parents is FIGHT, FIGHT and FIGHT. A PhD does not give a
person the right to ignore all other opinions and concerns.
Autism is not a mental illness, autistics have mental illnesses
because of inappropriate treatment. Drugs are not the answer. There is now
ample evidence that nutrition; malabsorbtion, allergies and other common
ailments play a major part in the symptoms often found in Autistic patients.
This is bad news to drug companies and those who feed off them. Drugs are
cheap social control!
* * *
On A 10 Year Old’s Tragic Event
Letter
This is another troubling, yet predictable, story. “10 Year Old
Autistic Child Arrested”’
Http://www.weartv.com/news/stories/december/1220/autistic.htm
We need to help students understand what is expected of them out here
in society. I think the educators need some in-service about how to
anticipate these outburst and deal effectively with them (Aspergers and
Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns by
Myles & Southwick-Autism Aspergers Publishing ISBN 0-9672514-3-5) and about
how to proactively educate police about ASD issues before they are called to
respond.
The ten-year-old, police and criminal justice professionals, defense
attorneys, prosecutors, judges need a fair, objective and informed
advocate—one who understands the needs of everyone involved in this tragic
event.
· Dennis Debbaudt, Port St. Lucie, www.policeandautism.cjb.net
Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy
Catherine Johnson PhD • Ron Sleith • Kay Stammers • Edward Decelie
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