07marchblog

1 Mar 07 - House for sale
A day off after 16 hours at work - yoga class - walk around Peasure
Bay, Castle Island, Fort Independence (S.Boston) - with a glimpse of
the JFK aircraft carrier, which came into Boston Harbor this morning.
Lunch at Sullivans on opening day - chowder and a hot dog - sitting in
the sunshine watching planes come into Logan Airport. Then off to
Weymouth to visit Ralf, where huge ugly signs in front of his house,
and the house next door, took me completely by surprise.

No one there at 3pm, and residents still not back from their day
program, so I went into Perfect Nails across the street for a pedicure
and manicure. The Vietnamese owner never looked more beautiful.
She has been undergoing chemotherapy for cancer. She is Conrad's
age, 43, and you have to wonder what they were all exposed to
during the war in Vietnam. She told me she is off chemo now,
because the tumor is shrinking. As Ralf often tells me, "Terrible
things happen to people, Mom." Our prayers may have helped.

Everyone in the shop saw the for-sale signs go up this morning, and
said they thought of me. There it is on www.djflynn.com - under
commercial listings for $599,000, and the house next door for
$499,000:

7,406 sf lot. 2,484 sf of living space. Located on Quincy/Weymouth
line on Rte. 3A. Across from a Dunkin Donuts and active Bar & Grille.
Ample parking. Has R-2 and B-1 Zoning.

9,147 sf lot. 1,673 sf of living space. Located on Quincy/Weymouth
line on Rte. 3A. Across from a Dunkin Donuts and active Bar & Grille.
Ample parking. Has B-2 Zoning.

The Bar & Grille is Kelley's Landing - a great seafood place, with
entertainment events. The original is in South Boston.

Staff as well as residents were shocked to come home and find the
for-sale signs up in front of their house. I will contact Vinfen, the
group home contractor, and find out if they don't have a lease for a
few more months at least? I will also contact the realty agent, Chuck
Burd for more info. What a shock!

2 Mar 07 - Milieu research training
Mandatory annual day-long training today - smaller than usual group on a wild and
rainy (better than snowy) day. Maybe the best part of training sessions is the
interaction we have with co-workers. Today the dentist and dental assistant were in
the class, which was significant for me because of the dental problems my own son
has been having. Regular dental checkups may be more important for mentally ill
people, but it can't be easy to deal with many of our angry, assaultive patients.

Topics today: (1) Fire safety, inflammable and toxic substances, inspections,and
evacuation procedures. (2) Infection control, blood spill procedures, isolation.
(3) Confidentiality, (4) Suicide prevention, (5) Medications and assessment for side
effects, pain management, abuse and neglect, (6) Performance improvement, patient
safety, patient rights, and ethics (7) De-escalation techniques, (8) Workplace
professionalism, boundaries, dress code.

Many newspaper articles report that correctional staff are not well trained. This
should be challenged. We are required to get 40 hours of training every year. I like
going to other correctional facilities in Massachusetts for training classes, for
additional insight into what we deal with in the prison population. Many inmates from
the other institutions spend time at the state hospital for evaluation and adjustment of
medications. Mental illness is widespread throughout the system, and much of it is
associated with low educational and occupational achievement.

3 Mar 07 - Baenziger et al. on better cerebral oxygenation in newborns with
60-90 second delay in clamping the umbilical cord.

Baenziger O, et al. The influence of the timing of cord clamping on postnatal cerebral
oxygenation in preterm neonates: a randomized, controlled trial. Pediatrics. 2007
Mar;119(3):455-9.

Follow-up of 39 pre-term infants (24-32 weeks gestation), exceprts:

"The infants in the control group were delivered conventionally, with the cord
clamped in less than 20 seconds."

"Three infants subsequently died (2 because of complications from hyaline
membrane disease and 1 because of neonatal sepsis); all 3 were in the control
group." Hyaline membrane disease means the lungs did not inflate.

Average Apgar scores at one minute =5 (sd 2) in both groups, and at five minues =8
(sd 1.7). An Apgar score of 5 (or even 7) at one minute represents respiratory
depression, which can lead to impairment within the brainstem auditory pathway.

"Six infants from the experiment group and 12 infants from the control group needed
mechanical ventilation."

"...our results demonstrate that the delayed cord clamping had its effect on systemic
oxygen delivery to the tissues..." and "...clearly demonstrates a higher cerebral tissue
oxygenation in the experiment group." ... "Inadequate cerebral oxygenation is an
important factor in the development of neonatal brain injury." ... "reducing the risk of
inadequate tissue oxygenation by a simple technique, such as delayed cord
clamping, would be very advantageous."

"We conclude that delayed cord clamping increases cerebral oxygenation for the first
24 hours after birth."

4 Mar 07 - Milieu research, moral idiots

Assignment today: Work on one of our maximum security units. Inmates are "higher
functioning" they say, but I think it is only that they sound higher functioning, like
children with Asperger syndrome who talk like "little professors." Some of the
inmates I worked with today try to cope by talking in an authoritative, commanding
tone of voice.

One man, nearly sixty, wanted medical grievance forms and asked me to lookup
where he should send them. "Who is the head of Medical Records? I need to know
how to get a copy of my medical records." I told him I was only putting in a guest
appearance on the unit, and asked if he couldn't wait until tomorrow and get this
information from the treatment team. "No, I need to send these forms off today." I
told him I would find the forms for him after I finished signing all the medication
administration sheets. "I need these forms, and I need them now!" he yelled out at
me. An officer came over and ushered him away.

Ten or fifteen minutes later he was back. "Did you find the forms yet?" I told him I
had not had time. "Do you remember what I asked for?" he persisted. Again, he
was ushered away by one of the unit officers. Several times he appeared at the
window. Then another inmate came to the window and asked for four grievance
forms, and he told me which file drawer they were in. The older man was right behind
him, and said, "I need five forms." So I looked in the drawer and gave them each the
forms they requested. I told them both to talk with the treatment team tomorrow
(Monday), and that I would write a note in each of their charts explaining what they
had asked me for. "You need to work with the regular staff on this unit," I told them,
to which the older man responded, "I can't work with them; they don't like me." Both
inmates were ushered away from my door again.

The older man looks at you with an expressionless stare. This could be referred to
as poor "eye contact," but his expressionless face and lack of eye contact, I would
suggest, might be explained by impairment of facial and oculomotor nerves. His
problems may be related to alcoholism and/or abuse of other drugs - I don't know him
that well, but just maybe he grew up on the autism-Asperger spectrum, and has
always been like this. He is not unique, but fairly typical of other inmates on this unit.
The nineteenth century term "moral idiot" fits them well.

Living together in society is a survival mechanism for members of the human species.
Those who cannot conform to social rules are defective (another nineteenth century
term). However, I should not say this man is not unique. The problem with
psychiatric diagnoses is that human individuality overrides many features of any
diagnosis. This is also why it is difficult to pinpoint autism, other than noting
particular autistic behaviors. There is a spectrum, and understanding the extremes
of behaviors across the lifespan is most important for classification, and association
of particular autistic features with loci of neurological impairments.

More on lifespan autism in another blog entry later.

5 Mar 07 - Dental checkup
Ralf and I went for a follow-up dental checkup this morning. The dentist is a
professor at the Boston University Dental School, and he complimented Ralf on
having taken very good care of his mouth since the oral surgery last Tuesday. Ralf
assured him that he does not want to have to undergo surgery again, and he will be
sure that he makes regular dental appointments in the future.

This is a dental practice specializing in dentistry for disabled children and adults. On
the shelves in the waiting room there are magazines, pamphlets, and flyers for
various organizations that serve children with autism, deaf children, and various
other conditions. As I glanced through a booklet on how to care for your child's
brain, a young girl arrived in a wheelchair with her father - nice to see a father so
involved. She is severely cerebral palsied, almost continually making athetoid
movements of her arms and hands. What a tragic catastrophe. What a beautiful
child, but the care she needs is almost unimaginable. God bless her father, a
friendly and warm person, who must have sacrificed a lot for his daughter.

Care for your child's brain? I have spent enough of my life as a computer
programmer (software engineer) to know that trying to work with broken machinery is
hopeless. Euphemisms like re-wiring, or plasticity are not helpful. The best care for
your child's brain is to make sure no lapse of respiration occurs during or after birth.
An Apgar score below 7 at one minute after birth is already ominous,

6 Mar 07 - Milieu research, change of shift emergency
I was told a little before 9am that I would be forced. I asked if I could come in
tomorrow instead, and an hour later I got a call telling me I would not be forced if I
come in tomorrow. Meanwhile, I had called Ralf's house, before they left for their day
program to explain that I would not be able to come by after work - good that I did
because just a few minutes before the end of shift, I had to respond to a "code" in
ITU (the Intensive Treatment Unit). Afterwards I had to enter an incident report into
the computer, after quickly doing the change of shift sharps count. I was almost an
hour late getting out of work.

I worked on the infirmary today, and had more diabetics than lancets and syringes on
hand. Tomorrow is the day sharps are dispensed, but I had to request a special,
early order, and one patient did not get his fingerstick until after lunch.

We first heard the incident that led to the code over the radio. A patient on the
maximum security unit I worked on Sunday became enraged at his treatment team,
and his anger with plenty of expletives got broadcast out to every radio in the
hospital. He was placed in seclusion in ITU, then about a half hour later the code
was called. He had ripped his mattress to shreds and tried to strangle himself with
the binding. He was then put in four-point restraints, which is where I may still find
him tomorrow if I work in ITU as scheduled. His is a sad story, as is the case with
most of our patients, especially those who require maximum security.

On the way home I heard on the radio that the sixteen-year-old special education
student who stabbed a classmate to death a few weeks ago, in the boys bathroom at
school, is being sent to a DMH (Department of Mental Health) hospital adolescent
unit for a psychiatric evaluation. It is said he has Asperger syndrome. When he
comes of age, he may well be committed to the DOC (Department of Correction)
hospital where I work. Quite a few adolescent murderers are serving their life
sentences there, and some could be viewed as former children on the autism
spectrum.

Better research, on the brain impairment and its cause, is needed to stop the current
epidemic. The genetics theories continue in the forefront, without evidence of how
they might affect the brain. Part of the problem is that most research on children with
autism spectrum disorders neglects consideration of the long-term outcomes, and
what happens to children with autism when they become adults.

7 Mar 07 - Milieu research: On Plymouth Rock with outstretched arms
My co-worder, Patti, and I just happened to walk into the Intensive Treatment Unit
(ITU) together at 6:30 this morning. Only one patient was awake and standing at his
door. "Oh, my two favorite nurses are here today," he called out to us. This was the
patient who caused the emergency at change of shift yesterday. We seemed to fall
further and further away from being his favorites as the day went on - the attention
he wants is just beyond what anyone can give without neglecting the other patients
on the unit.

Two former patients were back. The "revolving door" brings them back too often
after discharge to a Department of Mental Health (DMH) hospital - from there they
are "mainstreamed" as quickly as possible to a community group home, and then too
often the cycle of getting in trouble begins all over. The Department of Mental Health
is trying to get as many people into the community as possible, the goal being to
continue closing the state hospitals. The current thinking seems to be that mental
illness is on the decline, and that people fare better in group homes. The big
problem is that group homes do not attract staff with long-term ambition to make a
career of staying with a particular house or group of patients.

The unit was full, fifteen beds. After 8am rounds, three were discharged, one back to
the maximum security unit I worked on Sunday, the two former patients to the
admissions unit (where I am scheduled to work tomorrow). One of them changed his
mind at the last minute, and spent the rest of the shift in ITU.

Our only admission was a patient from the maximum security unit where I worked
Sunday - the patient who told me to look in the second file drawer for medical
grievance forms. He was brought to ITU for writing a threatening letter to the unit
director. During his admission assessment he told me, "What I wrote was just what
was on my mind, not what I planned to do." This is a patient many of us feel has
Asperger syndrome. He has recently written at least fifty letters to staff - "It's my
hobby," he told me last week when he was in the infirmary. Today one of the security
officers asked him where he got all of the envelopes, and he told us he got some
from the library and some from the mental health worker on his unit. All were neatly
addressed in his distinctive block-letter style of writing. The one he sent me was just
two sheets of paper (pages 9-12) from the information and rules packet given to
each patient.

I and two of the mental health workers in ITU today remember this patient from the
day we started working at Bridgewater fifteen years ago. He arrived in
Massachusetts on a bus from another state, and had not been in touch with his
family, because, "I don't think they would be too proud of me." With much
encouragement he finally called home, to the great relief of his mother and
grandmother. Two of us remembered a few years ago he told us he came to
Massachusetts because he wanted to stand on Plymouth Rock and stretch his arms
out toward the ocean our brave forebears crossed to start this great nation."

8 Mar 07 - Milieu research, bad reaction to medication
I have been working a lot lately to try to stockpile enough money to go the IMFAR
conference in Seattle without having to put the hotel and other expenses on my
credit card - I am also still struggling to pay off my trip to the Fetal and Neonatal
Physiological Society (FNPS) meeting in England last September, plus the HD TV I
had to buy when my nearly 20-year-old TV broke last summer. That every work day
adds something new to my understanding of mental illnesses, is what makes it worth
while. Some days are hard though, and I come home really tired and/or upset.

Today we had a mandatory nursing meeting and training, on peer-review of
medication administration. Just as we were leaving the meeting, a code was called
on my unit (the admissions unit today). The patient was one of the patients
discharged from ITU yesterday. The unit psychiatrist called the code because he
was having a bad reaction (tachycardia) to the medication prescribed in ITU
yesterday. The patient is a young man, formerly on the unit where I worked for many
years as a Mental Health Worker. He was discharged to Westborough State Hospital
(where my own son Ralf was, and where I am still a trustee). He did so well there,
and was discharged to a community group home. There he got into trouble shortly
after another patient (also from Westborough) committed suicide in the group home.
I verified that this tragic event actually took place. I don't know why he was arrested,
but this is the second time he has been sent to Bridgewater from the county jail.

He is in the infirmary now, which is where I was supposed to be working tomorrow. I
just got a phone call that I will be in ITU instead - next door to the infirmary. Hopefully
the young patient will have recovered and be back on the admissions unit. The
medical doctor stopped all of his psych meds for now.

My work is not just a job for me, nor was my work at Digital - especially when my job
was to train field service engineers on software trouble-shooting. Their job was hard,
going to customer sites and taking a lot of heat from angry customers. It was
important for them to have tricks to pinpoint problems in a hurry, and replace broken
hardware components as quickly as possible. Now I work with people, whose broken
minds and spirits cannot be clearly understood or fixed. I think none of us just walk
out the gate and forget about the patients we work with.

9 Mar 07 - Milieu research: Recovery from the medication reaction
I went to the infirmary on my way into the medical building. The patient with a bad
reaction to medication yesterday was no longer there. Good, I thought, he must
have gone back to the admissions unit. But, when I walked into the ITU, there he
was, looking out the door of his room. I went over and spoke to him. "I'm fine now,"
he told me, "I hope I can go back to the unit soon, and get to talk to the psych doctor
again." He likes her. She is kind and concerned about patients' well-being.

At the morning rounds, it was decided he could leave. He was transferred to ITU
yesterday afternoon after he was found in the bathroom with a sheet wrapped
around his neck. He said he felt so dizzy, and that was how he could get people's
attention. I was reminded of Ralf's slow recovery from the anesthesia he was given
for oral surgery. It took a good night's sleep for him to get over feeling quite
disoriented.

There were only two admissions to ITU today. The first was a newly admitted patient,
who has so-far refused the medication prescribed for him. He is a tall nice looking
young man, but very child-like in his behaviors and speech. He would not answer
any of my questions, but did tell the unit director that he forgot to get coffee in the
chow line, and when he was told he could not go back to get some, he shoved the
officer who denied his wish. Like many of our patients, he appears unaware of his
own strength, and pushing back like a small child is viewed as assault. I view this as
a residual of developmental disability in many of our patients.

The second admission was from the maximum security unit I worked on Sunday. Two
shanks were found in the patient's sock during the pat-down before the 11am count.
The patient claimed these were instruments he used to make soap carvings, but he
had made threatening remarks to one of the social workers a few days ago, which
can never be taken lightly, and raise subsequent vigilance for deviant behaviors.

I am so glad to have this weekend off. Tomorrow Ralf and I are going to Cape Cod
for the day - my reward to him for having been so brave in going through with the
oral surgery.

11 Mar 07 - Return to memories of happier times
Ralf has been keen on returning to places of his childhood. A few weeks back we
drove through Arlington MA, where we lived when he was growing up, and he insisted
on going up Highland Avenue to have a look at our old house. It's been so changed
by whoever lives there now. One of the big beautiful trees in front is gone - "How
sad," Ralf commented. Then he wanted to go by the Menotomy Rocks Park, and
Robbins Hill Farm playground. "Theses are some of my best memories," he told me.
"Even the Brackett School?" I asked. "Yes," he replied. The school is across the
street from the Robbins Hill Farm playground. He was expelled from there when he
was in kindergarten - and he was already reading, which none of the other children
could yet!

The return to Riverview, and the children's dance class reminded me also of
memories of childhood, and dancing school, and later diving. A few years back I put
together some pictures of my diving days, and a visit back to New York for a team
mini-reunion and birthday party for our coach, Hazel Barr. Dancing and diving are
memories of a happier time, before autism had to become the focus of my life. I do
so resent the stereotyping of parents of children with autism, and trying to find every
possible trait that might put them on the "broader autism phenotype" spectrum (BAP).
At IMFAR in Seattle they are even having a pre-conference workshop on the BAP.

My diving pictures are here - I meant to post them long ago for Hazel:
http://www.inferiorcolliculus.org/wsateam.html

12 Mar 07 - Incarceration the costliest kind of long-term care
The most dangerous prisoner in Massachusetts was returned to maximum security
today - not quite as securely boxed up as Hannibal Lector was in the movie Silence
of the Lambs, but still pretty well shackled. We have plenty of inmates serving life
sentences in our hospital, for heinous, horrible crimes. Toward the end of my shift
today, one of these decided to strangle himself - it was the third code of the day I had
to respond to as infirmary nurse. As I left ITU, I heard him scream at the psychiatrist,
"What do I have to live for? I'm doing a life gig." We may be able to understand this,
but few of us could ever imagine taking someone else's life intentionally. What has
gone wrong in the brain? Murderous psychopaths are truly the ones who lack a
"theory of mind."

There was more in the paper today about the teen with Asperger syndrome who
stabbed another student to death in school. Is he a psychopath? Is Asperger
syndrome the wrong diagnosis for him? My son Ralf is said to have Asperger
syndrome, but violence is very frightening to him, as it is to most people with mental
illnesses. What should society do with murderers? Certainly the teen who stabbed
another student should never go free. The sorrow and struggle of the family of the
student murdered should perhaps be more in the news.

Some states have capital punishment, which some say costs more than lifetime
imprisonment. Some crimes could perhaps be prevented if the mental health system
did more than try to "mainstream" everyone with a mental illness into the community.
Dorothea Dix's concept of asylum for the mentally ill should be revived. Care in
mental asylums is costly, but far less so than in prisons. Until mental illnesses can be
prevented, society will bear the cost one way or the other.

Prevention is key, and the cause must be sought in the brain, and in what triggers
impairment of normal brain development.

13 Mar 07 - Milieu research, seizures & pseudoseizures
Sixteen hours in the infirmary, but much quieter than yesterday. A patient who had
presented with major problems on my shift, and continued to into the evening, was off
the unit. The overnight doctor finally called an ambulance and had the patient taken
to the hospital for an EEG.

The first two codes yesterday were for this patient. He was tended to first in the
commons building (activities center, library, school rooms, gym, chow hall). He was
sitting on the floor in the lobby having an anxiety attack. The doctor gave him a
brown paper bag to breathe into. The patient was then helped to walk over to the
infirmary, where he occupied my time for the next hour and a half. The doctor told
me to send him back to the admissions unit after his vital signs were stable. Pulse
and respirations were rapid, temperature and blood pressure were within normal
limits. I called the admissions unit (B building) treatment team, and the psychologist
came over to the infirmary. Her interventions were most helpful, and I was ready to
send the patient back to B building, but after getting off the stretcher in the treatment
room, the patient fell on the floor. The doctor came to help get the patient up and
check him out, at which time he began his rapid breathing again. We were up to the
11am "major count time," so the patient was assigned a temporary bed in the
infirmary.

The doors are locked for count. The patient got up off the bed assigned to him, and
fell. The only way to get into the room during "count" is to call a code. So a code
was called, and the patient then went into what appeared to be a seizure. The doctor
ordered an injection (benadryl), after which the patient became completely calm, and
his pulse and breathing became normal. He was helped onto the bed, and told to
stay there until count was over.

After count the patient was given a lunch tray. He ate everything on the tray, then
got up and asked in a calm voice if he could go down the hallway to use the phone. I
suddenly turned into a nurse-ratchet, and told him he could go back to the B building
to use the phone. The doctor came and told the patient to return to the B building,
and he gave the patient the brown bag to take with him.

The doctor explained to us that the patient had had a pseudoseizure. I have dealt
with these before, but only in women, who also claimed to have multiple personalities,
and PTSD from early sexual and physical abuse (often of a ritualistic nature, as
frequently described in magazines in the early 1990s).

I, of course, had to refresh my memory of pseudoseizures when I got home.
Abstracts in PubMed described pseudoseizures - they are not associated with EEG
abnormalities. So many of our patients are on medications to control true seizure
disorders. Seizure disorder is the saddest of afflictions, especially for men, because
it means denial of the usual rite of passage most looked forward to by teenagers, to
obtain a driver's license.

15 Mar 07 - Institute of Medicine Workshop - response to "public input"
I don't think I will make any plans to attend the IOM workshop. If all I can do is stand
in line to speak with presenters during breaks, I will continue trying to communicate
my ideas in written form.

My input:
From: Eileen Nicole Simon [mailto:eileen4brainresearch@yahoo.com]
Sent: Wednesday, March 14, 2007 9:03 PM
To: neuroforum
Subject: Research strategy using fMRI

I received an email today about the workshop on autism and environment that will
take place April 18 & 19. Below is the comment I sent with my registration for the
workshop, and I do hope to get some feedback on my ideas about research strategy:

(1) How the brain is impaired, and how early impairment affects brain maturation
should be the focus of research on environmental factors underlying autism.
(2) Evidence from primate research on asphyxia at birth has been available for
nearly half a century, that the midbrain auditory system is most vulnerable to a brief
episode of anoxia. (3) Lately statistics for "respiratory depression" at birth can be
seen are similar to statistics for current prevalence of autism. It is hard to
understand why these data (1, 2, & 3) have not been taken into account. (4)
Impairment of function in the midbrain auditory system can be seen on fMRI, and this
should be an important tool in investigating developmental language disorder.
Please look at my proposal at: http://www.inferiorcolliculus.org/presentation.html.

Please respond with comments. Thanks.

Sincerely,

Eileen Nicole Simon, PhD (biochemistry), RN

Response:
Thank you for your email. The agenda to the workshop has been posted
(http://www.iom.edu/CMS/3740/35684/39826/41260.aspx). Unfortunately, there is not
going to be a formal opportunity for feedback on proposals; however, I encourage
you to speak with people during the breaks.

16 Mar 07 - Milieu research, court date on the Evacuation Day holiday
Today the evacuation day holiday (aka St. Patrick's day) was celebrated, a day early
because tomorrow (the 17th) is a Saturday. We also endured a big snow storm.
Evacuation day is traditionally a holiday for all state hospitals, even outside of Boston
and Suffolk County, but hospitals of course need nurses 24/7, even when
administrative staff have the day off. When I got the phone call last evening to come
into work, I declined because of the impending snow storm that dominated all news
reports yesterday. When I woke up this morning it had not yet started to snow, and
the 5am news indicated that the storm would not start until about 10am. I called to
see if they still wanted me to work, which they did, so I quickly packed some lunch
and hit the road.

Neither holiday nor storm prevented courts in Boston from doing business, and as I
walked into the infirmary I was told I needed to get one of our wheelchair-bound
patients ready to go up to Boston for court. There he was lying in bed completely
soaked in urine. His catheter bag had 400ml of urine in it, but the tubing had gotten
detached. I am grateful that our Director of Nurses (serving today as nursing
supervisor) is not afraid to pitch in up to her elbows in the milieu of patient care, and
the two of us managed to get the patient cleaned up, dressed, and into the
wheelchair. The same patient had been uncooperative in getting ready to go out for
an MRI a few days ago, but this morning he seemed to look forward to going before
Judge Redd. "He's a black man," he told me - small world, I happen to attend yoga
classes with Judge Redd's mother.

It was somewhat of a relief to have this needy, helpless patient off the unit for awhile,
but other problems soon arose to make the day interesting and hectic. The only time
I had to sit for a few minutes was with a patient during his inhalation therapy, and to
get to talk with this patient. He is in his late sixties and reminisces a lot about growing
up on a farm, and all the things he used to do with his father. He murdered his
father, which is a source of continuing deep regret and grief. This same patient still
goes into sudden, unpredictable (almost epileptic) fits of rage, and can be very
dangerous. This is why during inhalation therapy he is watched not only by a nurse,
but also by a correctional officer. Usually it is the second, medication nurse on the
unit who sits with the patient for inhalation therapy. We were short-staffed today, so I
was the only nurse on the unit.

Our patient who went out to court returned in the early afternoon. He was in a more
cheerful mood than I have seen him recently. "I'm back here for 20 more days," he
told me. He also told me he enjoyed getting to go up to Boston, and that the snow
was really coming down up there. He is sent to Bridgewater State Hospital frequently,
but lives mainly in homeless shelters in Boston. Winter time is a good time to bring
himself to the attention of the police and get to come to the hospital for awhile, and
his most recent arrival was during a particularly bitter cold spell. This time he has
suddenly become nearly totally helpless. Whether this is neurologic or a way to
insure a prolonged stay is still trying to be determined. He asked me for some
tylenol, then went into the TV room to watch basketball (the March-madness college
tournaments) for the rest of the shift. I remember him from years ago, when he used
to love to play basketball himself.

Toward the end of the shift, I got a call from Medical Records that a doctor at Beth
Israel-Deaconess Hospital in Boston needed information on one of our patients who
was sent there yesterday. I paged the doctor, who called back just as my relief for
second shift arrived. She asked me to fax several pages of the chart to her - too bad
we don't yet use computerized medical records - they do at the BI-Deaconess. I took
the chart up to Medical Records, where we copied and faxed much of this interesting
patient's record up to Boston - I realized walking between buildings how bad the
storm was getting.

The patient (now in his early fifties) was first admitted to a psychiatric hospital, the old
Boston State Hospital, in his teens. He is now considered to be slightly retarded,
though he seems to me possibly on the autism spectrum; his legal charges are child
molestation. He has long been known for going into an unresponsive state
(catatonia or petit-mal). He was recently transferred into our ITU unit after assaulting
the patient I described above who murdered his father. In his chart, the patient's
comment on admission to ITU was, "He punched me in the face." This is highly likely,
and the altercation was only noticed after the combatants ran into the hallway where
video monitors recorded the patient now at BI taking down the older, and now much
weaker, man. The patient now at BI is in their MICU having had a recent massive
seizure. If he was punched in the face, he is likely to have suffered trauma to the
brain.

It was nearly five o'clock before I got out of work, then had to clear snow off my car
and head home at the height of Friday afternoon rush hour in the biggest snow storm
we have had all winter. It took me nearly two hours to get home - time to finally relax
and contemplate the events of this Evacuation Day holiday. The parade in South
Boston (for St. Patricks Day) will take place Sunday. I am on the schedule to work
again Sunday, so will at best only see parts of the parade on TV in the infirmary.

17 Mar 07 - The Interagency Autism Coordinating committee (IACC)
If I felt put off by the reply from the Institute of Medicine on my submission for "public
input," I need to remember going down to NIMH in Bethesda for an Autism Summit
meeting, with a prepared statement that was not to exceed 5 minutes - maybe it was
15 minutes. But by the time the main presenters finished with their over the time-limit
talks, those of us who came with brief prepared statements were asked to keep our
remarks under 3 minutes - or maybe it was 2 minutes, or even a minute and a half.
Then when the "research roadmap" was posted online, there was no mention of
including research on perinatal anoxia, and I had sent my prepared comments to
every member of the IACC.

I recently received an email, from Safe Minds I believe, that the IACC was requesting
comments on the IACC Report (the so-called roadmap for research). Following is
what I submitted, prefaced by a curt acknowledgement. I will now try to keep track of
IACC activities as well as those of the IOM, but it is discouraging to try to join in on
meaningful discussions.
--
RE: Comment on the IACC Report
IACC (NIH/NIMH) <iacc@mail.nih.gov>
To:Eileen Nicole Simon <eileen4brainresearch@yahoo.com>

Received. Thank you.
--
From: Eileen Nicole Simon [mailto:eileen4brainresearch@yahoo.com]
Sent: Sunday, January 14, 2007 12:01 PM
To: IACC (NIH/NIMH)
Cc: Insel, Thomas (NIH/NIMH) [E]
Subject: Comment on the IACC Report

Below is the comment (421 words + 18 references) that I want to submit on the
Interagency Autism Coordinating Committee (IACC) Report. I hope my perspective
can be included. Thanks.

Eileen Nicole Simon, PhD, RN
--
Complications at birth should be included in the autism research matrix, especially
because a lapse in respiration at birth can cause ischemic damage of the brainstem
auditory pathway [1, 2]. Children usually learn to speak "by ear," and within the first
decade of life can easily master a second language without accent – this is a critical
period of great importance for human development.

Rapin (1997) pointed out that "verbal auditory agnosia" may be the impediment to
language development in some children with autism, an inability to recognize syllable
and word boundaries in rapid streams of speech [3]. Brown and Bellugi (1964)
determined that the normal stage of "telegraphic speech" results from the child's
recognition of stressed syllables [4, 5]. The child with autism, on the other hand,
begins speaking with phrase fragments, often applied out of context [6-9].

Ischemic brainstem damage was found in monkeys subjected to asphyxia at birth, but
brain development did not follow a normal course in animals allowed to survive for
several months or years [10]. The maturational abnormalities found are comparable
to some of those seen in the brains of people with autism [11].

Autism has many well-recognized etiologies (tuberous sclerosis, fragile-X syndrome,
neurofibromatosis, prenatal rubella infection, prenatal exposure to valproic acid or
alcohol, phenylketonuria, adenylosuccinate lyase defect, and mitochondrial
disorders). All must affect whatever brain area is required for normal language and
social development. Additionally, statistics for "respiratory depression" at birth are
similar to those for prevalence of autism [12, 13]. Glasson et al. (2004) found infants
who later developed autism "were more likely to have taken more than 1 minute
before the onset of spontaneous respiration" [14]. Bodier et al. (2001) in an
investigation of 295 cases of autism in France , found only one third had no
discernable medical condition, but perinatal problems had occurred in 77 percent of
the children without other medical problems [15].

Complications at birth must not be overlooked as an etiological factor in at least
some cases of autism. Abundant evidence indicates oxygen insufficiency at birth
may be responsible for the neuropathology underlying developmental language
disorder in some cases of autism [16, 17].

I have posted more at http://www.conradsimon.org/, and posted a research proposal
to visualize auditory pathway function with fMRI at http://www.inferiorcolliculus.org/.
Current obstetric practice mandates clamping the umbilical cord immediately at birth,
to maintain a "sterile field" for suturing and for neonatologists to "ventilate" the lungs
if the newborn does not breathe before the cord is clamped [18]. I discuss my
concerns over this practice at http://www.placentalrespiration.net/.

REFERENCES:

Windle WF (1969) Brain damage by asphyxia at birth. Scientific American 221
(#4):76-84.
Myers RE (1972) Two patterns of perinatal brain damage and their conditions of
occurrence. American Journal of Obstetrics and Gynecology 112:246-276.
Rapin I (1997) Autism. New England Journal of Medicine 337:97-104.
Brown R, Bellugi U (1964) Three processes in the child's acquisition of syntax.
Harvard Educational Review 34:133-151.
Brown R (1973) A First Language: The Early Stages. Cambridge , MA : Harvard
University Press.
Kanner L (1946) Irrelevant and metaphorical language early infantile autism.
American Journal of Psychiatry 103:242-246.
Simon N (1975) Echolalic speech in childhood autism, consideration of possible
underlying loci of brain damage. Archives of General Psychiatry 32:1439-1446.
Brown R (1975) A collection of words and sentences, an autistic child. In R
Brown RJ Herrnstein, Psychology (pp. 444-449). Boston : Little, Brown and
Company.
Prizant B (1982) Gestalt processing and gestalt language in autism. Topics in
Language Disorders 3:16-23.
Faro MD & Windle WF (1969) Transneuronal degeneration in brains of monkeys
asphyxiated at birth. Experimental Neurology 24:38-53.
Kemper TL, Bauman M (1998). Neuropathology of infantile autism. Journal of
Neuropathology and Experimental Neurology 57:645-652 .
Baskett TF, Allen VM, O'Connell CM, Allen AC. (2006) Predictors of respiratory
depression at birth in the term infant. BJOG. 2006 Jul;113(7):769-74.
Milsom I, Ladfors L, Thiringer K, Niklasson A, Odeback A, Thornberg E. (2002)
Influence of maternal, obstetric and fetal risk factors on the prevalence of birth
asphyxia at term in a Swedish urban population. Acta Obstet Gynecol Scand.
2002 Oct;81(10):909-17.
Glasson EJ, Bower C, Petterson B, de Klerk N, Chaney G, Hallmayer JF. (2004)
Perinatal factors and the development of autism: a population study. Arch Gen
Psychiatry. 2004 Jun;61(6):618-27.
Bodier C, Lenoir P, Malvy J, Barthélemy C, Wiss M, Sauvage D. (2001) Autisme
et pathologies associées. Étude clinique de 295 cas de troubles envahissants
du developpment. Presse Médicale 30(24 Pt 1):1199-203.
Matsuishi T, Yamashita Y, Ohtani Y, Ornitz E, Kuriya N, Murakami Y, Fukuda S,
Hashimoto T, Yamashita F (1999) Brief report: incidence of and risk factors for
autistic disorder in neonatal intensive care unit survivors. Journal of Autism and
Developmental Disorders 29:161-6 .
Badawi N, Dixon G, Felix JF, Keogh JM, Petterson B, Stanley FJ, Kurinczuk JJ.
Autism following a history of newborn encephalopathy: more than a
coincidence? Dev Med Child Neurol. 2006 Feb;48(2):85-9.
ACOG Committee on Obstetric Practice (2006) ACOG Committee Opinion No.
348, November 2006: Umbilical cord blood gas and acid-base analysis. Obstet
Gynecol. 2006 Nov;108(5):1319-22.

18 Mar 07 - Milieu research: Standards of care for the mentally ill
Our patient committed for 20 more days has remained helpless and in need of total
care, but 20 days is not that long - it can still be cold in April. An article in the Boston
Globe yesterday described the living arrangement of one homeless couple under the
basement stairwell of an abandoned building. Our patient told us he had made use,
when possible, of the Pine Street Inn or the Long Island Shelter. Our weekend
supervisor worked for awhile at Pine Street, and said sometimes they had to put
people up in the hallways on cold nights. Mayor Menino of Boston has a mission to
make sure all homeless people are indoors during the coldest weather. The Long
Island Shelter is an old TB hospital on Long Island in the Boston Harbor. People are
bussed out there after checking in at Boston City Hospital. I have seen lines going
around the corner waiting to get into City Hospital. Our patient told us he lost his
wallet on his last stay at Long Island. I have heard stories of people waking up after
a night at Long Island, and not being able to find their shoes - where many homeless
hide what little money they have, or other possessions like their social security card.

Standards of care in mental health are not what they should be. Shelter is a basic
need, for all living creatures. One of my sons lives in Boston at a rent he can barely
afford. He prefers the city because of public transportation and other conveniences,
but is now looking into places with lower rent, but where he will need a car again.
What are the poor mentally ill to do? Most cannot drive because of physical
limitations, including seizure disorder. Still, the goal seems to be to "mainstream"
everyone into the community - the biggest limitation is public funding. I still believe in
the old asylum system, but the old state hospitals are now mostly closed, and the
land given up for private development.

During inhalation treatment, our patient who murdered his father and can still be
dangerous, told me he has been at Bridgewater now for 24 years. I replied that there
are worse places he could be. "Yes, he said, but also better places." He then went
on to describe doing time in Oregon, where from the chow hall they had a beautiful
view of Mount Hood. "It's always snow covered," he reminisced. His life has been
spent doing time, which he does not seem to view as punishing.

19 Mar 07 - Milieu research: Helpless and hopeless patients
Our homeless man was a little less helpless this morning getting ready to go up to
the Shattuck Hospital for an MRI, and again it was a relief to have him off the unit for
awhile. Our other total care patient tried hard all day to rehabilitate himself. He
spent much of the day going up and down the corridor with his walker, alternately
yelling and being nasty to everyone in sight, then coming to himself and flashing his
bright beautiful smile.

The patient who had been at Beth Israel-Deaconess was back. He spent the whole
day in a trance-like state. It was difficult to get more than a yes or no response on
any attempt to communicate with him. While he was in the shower, I was informed he
was drinking from his soap dish. I ran down to try to get him out and dressed,
because it was almost count time. I dressed him, including putting a diaper on. He
remained totally helpless. We were up to count time, and he was led barefoot down
to his room. I gave him his shoes, and told him to put them on during count. He just
sat motionless during the whole half-hour period. He still did not have his shoes on
when he went down to the lunch room. He did eat.

Our patient who went out for an MRI returned at lunch time, and was again totally
helpless and had to be fed. He asked if he could talk with a pastor. I called, and was
told the pastor would come over during the afternoon.

Back in the nursing trap, I was signing off the medications, and thought I saw the
pastor come on the unit. It was a young psychiatrist from one of the long-term units
who needed to write a note about a patient discharged from the infirmary earlier.
The chart was still in the infirmary because to save money (caused by state funding
shortfalls) the discharged patient's unit was closed for the day, and the patients
assigned with correctional staff to the commons building for activities, count, etc.
The minimum housing units are closed on a rotating schedule during the week.
Department of Corrections as well as Mental Health could use more funding, but we
are told society as a whole (taxpayers) could care less what happens to criminals and
the indigent mentally ill.

As he wrote the note, the young psychiatrist told me he would only be here another
two months. He is going to Washington, to work in one of the child advocacy
agencies. I told him he may well hear from me in that capacity. He has an interest in
autism, and knows my viewpoint on the brain impairment. We continued chatting, but
suddenly a code was called over the radio, and I had to jump and run. The code was
in ITU for the same patient (doing a lifetime gig) who not long ago had tried to
strangle himself. The patient was standing up and conscious by the time I arrived,
and the medical doctor was assessing him. Department of Corrections has been
faulted lately in the newspapers for not being watchful enough of suicidal inmates.
This is not true at our facility, where all patients in ITU are under continual
surveillance by video cameras with room checks every 10 minutes for incidents like
this.

We all had a memo in our mailboxes this morning reminding us of the need for
careful monitoring of our patients. Funding is short, but we work hard to give good
care.

20 Mar 07 - Stella Chess
The death of Stella Chess was reported this morning in the Schafer News (online
autism info), with a link to the obituary in the New York Sun at http://www.nysun.
com/article/50786. Stella Chess brought attention to a high incidence of autism in
children affected by prenatal rubella infection:

Chess S (1971) Autism in children with congenital rubella. J Autism Child
Schizophr 1:33-47,
Chess S (1977) Follow-up report on autism in congenital rubella. J Autism Child
Schizophr 7:69-81
Chess S et al. (1978) Behavioral consequences of congenital rubella. J Pediatr
93:699-703.

Abstract (from PubMed of the 1977 article:

A longitudinal study was conducted of 243 children with congenital rubella. In this

sample a high rate of autism and a high rate of recovery were observed.

Examination of the data suggested that the rubella virus was the primary etiologic

agent. It is hypothesized that the course of autism was that of a chronic infection

in which recovery, chronicity, improvement, worsening, and delayed appearance

of the autistic syndrome all were found. Other rubella consequences such as

blindness, deafness, and cardiac and neuromuscular defects remained present

except as modified by operations and prostheses. Degree of mental retardation

initially was related to the outcome of autism but shifts in mental retardation over

time did not correlate significantly for the group with shift in the autistic symptoms.

Abstract (from PubMed of the 1978 article:

Psychiatric and behavioral consequences of congenital rubella are reported for

243

children studies during the preschool period, and for 205 of these who were

re-

examined at ages 8 to 9. At preschool 37% were retarded, with the skew

toward

severe and profound; 15% had reactive behavior disorder and 7% had

autism. At

school age retardation diminished to 25%, but neurotic problems and

behavioral

pathology due to neurologic damage both increased. There were two

remissions and

three new instances of autism.

I am registered to attend the CTIA conference this coming Friday and Saturday (Mar
23 & 24), and had considered suggesting Stella Chess as a possible award
recipient. Being busy, I didn't get a round to it, but will try to bring up her work at the
conference - a prime example of a non-genetic etiology of autism.

Stella Chess and her husband, Alexander Thomas, also edited the Annual Progress
in Child Psychiatry and Child Development. I felt honored that they reprinted two of
the articles I had published:

Simon N (1978) Kaspar Hauser's recovery and autopsy: A perspective on
neurological and sociological requirements for language development. Journal
of Autism and Childhood Schizophrenia 8:209-217. Reprinted in S. Chess and
A. Thomas (eds.) Annual Progress in Child Psychiatry and Child Development
1979, Vol. 12, Chapter 11, pp. 215-224, Brunner/Mazel: New York, 1979.
Simon N (1975) Echolalic speech in childhood autism: Consideration of possible
underlying loci of brain damage. Archives of General Psychiatry 32:1439-
1446, 1975. Reprinted in S. Chess and A. Thomas (eds.) Annual Progress in
Child Psychiatry and Child Development 1976, Vol. 9, Chapter 25, pp. 471-490,
Brunner/Mazel: New York, 1977.

Late vs Early Clamping of the Umbilical Cord in Full-term Neonates:
Systematic Review and Meta-analysis of Controlled Trials
Eileen K. Hutton; Eman S. Hassan
JAMA. 2007;297:1241-1252.

Context With few exceptions, the umbilical cord of every newborn is clamped and
cut at birth, yet the optimal timing for this intervention remains controversial.
Objective To compare the potential benefits and harms of late vs early cord
clamping in term infants.
Data Sources Search of 6 electronic databases (on November 15, 2006, starting
from the beginning of each): the Cochrane Pregnancy and Childbirth Group trials
register, the Cochrane Neonatal Group trials register, the Cochrane library,
MEDLINE, EMBASE, and CINHAL; hand search of secondary references in relevant
studies; and contact of investigators about relevant published research.
Study Selection Controlled trials comparing late vs early cord clamping following
birth in infants born at 37 or more weeks’ gestation.
Data Extraction Two reviewers independently assessed eligibility and quality of
trials and extracted data for outcomes of interest: infant hematologic status; iron
status; and risk of adverse events such as jaundice, polycythemia, and respiratory
distress.
Data Synthesis The meta-analysis included 15 controlled trials (1912 newborns).
Late cord clamping was delayed for at least 2 minutes (n=1001 newborns), while
early clamping in most trials (n=911 newborns) was performed immediately after
birth. Benefits over ages 2 to 6 months associated with late cord clamping include
improved hematologic status measured as hematocrit (weighted mean difference
[WMD], 3.70%; 95% confidence interval [CI], 2.00%-5.40%); iron status as
measured by ferritin concentration(WMD, 17.89; 95% CI, 16.58-19.21) and stored
iron (WMD, 19.90; 95% CI, 7.67-32.13); and a clinically important reduction in the
risk of anemia (relative risk (RR), 0.53; 95% CI, 0.40-0.70). Neonates with late
clamping were at increased risk of experiencing asymptomatic polycythemia (7
studies [403 neonates]: RR, 3.82; 95% CI, 1.11-13.21; 2 highquality studies only
[281 infants]: RR, 3.91; 95% CI, 1.00-15.36).
Conclusions Delaying clamping of the umbilical cord in full-term neonates for a
minimum of 2 minutes following birth is beneficial to the newborn, extending into
infancy. Although there was an increase in polycythemia among infants in whom
cord clamping was delayed, this condition appeared to be benign.
JAMA. 2007;297:1241-1252 www.jama.com

EDITORIAL
Timing of Umbilical Cord Clamping at Birth in Full-term Infants
William Oh
JAMA. 2007;297:1257-1258.

Excerpts of comments on the paper by Hutton and Hassan:

"...Because of uncertainty about the beneficial and potential
harmful effects of placental transfusion, the clinical
timing of cord clamping has been highly variable worldwide.
In the western hemisphere, the umbilical cord
tends to be clamped soon after birth, presumably to
facilitate resuscitation and stabilization of infants and
bonding of infants with mothers and because of concerns
regarding the adverse effects of placental transfusion."

"In developing countries the practice is much more variable,
and there is a trend toward delayed cord clamping (with the
resulting increase in blood and iron received by the infant at
birth) to counter the higher incidence of anemia during
infancy in these countries."

"The authors concluded that there is adequate evidence that
delaying cord clamping for a minimum of 2 minutes following
birth is of significant benefit to the neonate, extending into
infancy and causing little harm to the health of full-term
infants. This conclusion was based on the authors’ analysis
that showed a significantly lower incidence of anemia at age
2 to 3 months and an insignificant difference in the incidence
of transient tachypnea, jaundice, and polycythemia in term
infants with delayed cord clamping."

"For some clinicians who may consider the evidence provided
by meta-analysis strong enough to modify their practice
by delaying cord clamping of term infants at birth, several
issues deserve consideration. First, in the event of fetal
distress and neonatal depression, immediate resuscitation
should take priority over placental transfusion; immediate
clamping of the cord may be necessary so the infant can be
resuscitated."

Concluding sentence:
"Randomized controlled trials with sample sizes that are
adequately powered for beneficial and potential adverse
effects are needed before the practice of delayed clamping
can be strongly endorsed."

22 Mar 2007 - Boston Harbor drowning
Last Thursday (a week ago) I noticed the Navy ship moored at the Black Falcon Pier
on my way to yoga class, and it was still there yesterday. This morning it had left,
but without one of its sailors. I heard his grief-stricken father on the radio on my way
into town, expressing gratitude to the Boston Police. They had identified a body
found in the water off Long Wharf as that of his son. The young sailor (age 26) had
gone ashore with friends last Friday night, but became separated from the group.
The theory is that he became disoriented in the snow storm last Friday and
accidentally walked or fell off the dock.

It reminded me of the Monday after the fourth of July weekend in 1992. I had
worked the whole weekend at Bridgewater, but agreed to get together with my son,
Ralf, for breakfast on Monday. Ralf had been staying at a shelter, on the advice of
a probation officer, after involvement in an altercation at home with his youngest
brother, and at court they had me take out a restraining order to prevent him from
coming home. We have had so many ups and downs with Ralf, but too often when
we think he will be fine, something goes wrong.

I waited in my car outside the shelter. Watching the men come out, I knew this was
not a place Ralf would fit in. Most of the men went straight to the parking garage
across the street, and I saw them drive off a few minutes later. Do men sometimes
go live in a shelter after a divorce? In any case they did not look like people who
would even notice someone like Ralf. Finally I went up the steps and rang the bell.
A man came to the door and told me he hadn't seen Ralf all weekend.

I felt uneasy, but what could I do but return to my car? There on the front seat was
the Boston Globe, with headlines, "Man found drowned in Boston Harbor." I read
the article and learned the drowned man was found with cinder-blocks tied to his
feet. Then I read the description, which matched exactly what Ralf would be wearing.

I don't know how I managed to drive to the Lexington Police Station, from Waltham
about three or four miles. I ran in with the newspaper, and screamed, "Look what's
happened to Ralf now!" They sat me down, and immediately called Homicide in
Boston. Another party had just arrived to see if they could identify the body, and
they said they would call right back with the answer. I sat there and wept, but it was
not too long before the phone rang, and we learned that the body had just been
identified by the man's family.

I still wept, "Where is Ralf then?"

"Wait a minute," one of the officers replied, as he picked up the phone.

His hunch was right. People at Waltham-Weston Hospital knew of his whereabouts,
but without Ralf's written permission, were not permitted to tell me.

I am eternally grateful for the response of the Lexington police officer, "Listen, I have
his mother here, and we've just confirmed that he was not the man found drowned in
Boston Harbor. I don't care about the law, she needs to know where he is."

He handed me the phone. "I am going to tell you more than I am really allowed to
divulge," the person at the hospital told me. Your son is in a safe place, and I will
see if I can get him to call you."

I still wept. He was safe. I told the officers what I was just told.

"Can you make it home?" I was asked. I live only a little over a mile from the police
station, and I was free of the panic that gripped me during my drive from Waltham to
Lexington.

The phone was ringing as I unlocked the door. It was Ralf. I asked him why he
hadn't called me.

"I didn't think you would be too proud of me," he replied.

These were the same words I had heard from the patient at Bridgewater who had
wanted to stand with outstretched arms on Plymouth Rock (see blog entry for Mar 7).

"Where are you?" I asked.

"Westborough State Hospital."

"West where?" I remember asking that, and when he was discharged ten years later
to the group home in Weymouth, asking, "Wey where?"

I am eternally grateful for the care Ralf received at Westborough State Hospital.
The group home leaves much to be desired, and now that the house is being sold, I
may look into an alternative. I may try to get funding from somewhere to rent or buy
a house, find room-mates for Ralf, make sure he gets prepared for and takes the
GED test, and make sure he is in a meaningful supported work program.

I am haunted by sadness over the news of the young sailor who drowned in Boston
Harbor. His father, who expressed gratitude on the radio for the efforts of the police
in Boston, reminds me of my gratitude for what the police in Lexington did for me,
and Ralf. I can't imagine having to deal with his having drowned. I have remained
haunted by sadness (for nearly fifteen years ) for the man drowned in Boston
Harbor, with cinder blocks tied to his feet. What a horrible way to die.

The horror of death by drowning is a reminder of the most urgent, ongoing need of
all species dependent upon aerobic metabolism. A lapse in respiration at birth is no
less serious than throughout the rest of life.

23 Mar 2007 - Current Trends In Autism (CTIA) conference
I attended day 1 of the CTIA conference today, sponsored by Dr. Margaret Bauman
and ladders.org. Highlight of the day was the Higashi High School Band - how
impressive that these students, so clearly autistic, have learned to play their
instruments so well, trombone, trumpet, saxaphone, and one playing electric guitar.
Their band leader was also percussionist.

The conference opened with remarks by Dr. Felice Loverso, chief executive of Casa
Colina in Pomona, California (and a video from ABC-7 news) on the work they do
with veterans who suffered brain injuries in Iraq. It looks like another Trends in
Autism conference was recently held at Casa Colina, on March 10 and 11. I liked
the focus on rehabilitation, rather than total-care maintenance of brain-injured
patients, and Dr. Bauman emphasized the need for taking this attitude in working
with children with autism.

The lectures that followed were on biomedical conditions associated with autism (Dr.
Bauman), neuroimmune factors (Dr. Carlos Pardo), endocrinology and neuroactive
steroids (Dr. Andrew Herzog), gastrointestinal disorders in autism (Dr. Timothy
Buie), and metabolic disorders in autism (Dr. Marvin Natowicz and Jacqueline
Weissman). I also attended a break-out session with Dr. Katherine Martien on
imaging and EEG investigations of autism.

Dr. Buie put up a slide showing increased prevalence not only of autism, but also
Crohn's disease, type-1 diabetes, asthma, obesity, and food allergies. In PubMed, I
found the following citations that may be worth reading:

Gearry RB et al..High incidence of Crohn's disease in Canterbury, New
Zealand: results of an epidemiologic study. Inflamm Bowel Dis. 2006 Oct;12
(10):936-43.
Jansson SP et al. Prevalence and incidence rate of diabetes mellitus in a
Swedish community during 30 years of follow-up. Diabetologia. 2007 Apr;50
(4):703-10.
Tedeschi A, Airaghi L. Is affluence a risk factor for bronchial asthma and
type 1 diabetes? Pediatr Allergy Immunol. 2006 Nov;17(7):533-7.

Dr. Buie also commented that in a Norwegian population study, being born by
cesarean section was associated with a 7-fold increased risk of allergies to eggs,
fish, and nuts. I found the following in PubMed:

Eggesbo M et al. Is delivery by cesarean section a risk factor for food
allergy? J Allergy Clin Immunol. 2003 Aug;112(2):420-6.
Renz-Polster H et al. Caesarean section delivery and the risk of allergic
disorders in childhood. Clin Exp Allergy. 2005 Nov;35(11):1466-72.

I might try to ask at the Q&A panel session if increased prevalence of health
problems could arise from multi-organ dysfunction associated with hypoxic-ischemic
encephalopathy. Autism was an unexpected outcome among children with "newborn
encephalopathy" who were followed in an Australian investigation (Badawi N et al.
Dev Med Child Neurol. 2006 Feb;48(2):85-9.

Dr. Marvin Natowicz and Jacqueline Weissman presented data on genetic metabolic
disorders, with emphasis on mitochondrial disorders. I have had an interest in this
because neuropathology in Leigh syndrome is similar to that of Wernicke's
encephalopathy (bilateral symmetric lesions of the brainstem, with prominent
involvement of the inferior colliculi - see article by Cavanagh & Harding). The
following articles are of interest:

Wang HS, Huang SC. Acute necrotizing encephalopathy of childhood.
Chang Gung Med J. 2001 Jan;24(1):1-10.
Graf WD et al. Autism associated with the mitochondrial DNA G8363A
transfer RNA(Lys) mutation. J Child Neurol. 2000 Jun;15(6):357-61.
Cavanagh JB, Harding BN. Pathogenic factors underlying the lesions in
Leigh's disease. Tissue responses to cellular energy deprivation and their
clinico-pathological consequences. Brain. 1994 Dec;117 ( Pt 6):1357-76.
Leigh D. Subacute necrotizing encephalomyelopathy in an infant. J Neurol
Neurosurg Psychiatry. 1951 Aug;14(3):216-21.

The article above by Leigh is listed in PubMed, but without an abstract.

24 Mar 2007 - Current Trends In Autism (CTIA) conference, day 2
Back for day 2 of the CTIA conference today. I was most pleased to hear Dr. Gary
Mesibov speak about the TEACCH learning program they have developed at the
University of North Carloina, which is an ongoing research effort "to inform practice."
I applaud this kind of research because it is based upon milieu observations. Much
of what they have developed for young children, I still think might apply to adults like
my son Ralf. Maybe most important is the idea of teaching/ learning/ or working
toward a goal with a clear schedule, and especially defining an end-point.

People with autism are said to be "hyper-systemizers" (Baron-Cohen, Prog
Neuropsychopharmacol Biol Psychiatry. 2006 Jul;30(5):865-72). "Uh-oh," my
husband said on first hearing about this - he is much more of a systemizer than I am,
but Ralf, as an infant, distinguished himself as a hyper-systemizer. As a baby, he
had a place for every toy in his playpen, the stacking rings, plastic keys, peg block,
books, toy cars, etc. He loved all of these, and was happy for every new object
added to his collection. He would play with everything, but when he got bored, or
hungry, and wanted to get out of the playpen, he would put each and every toy in its
special place around the edge of the playpen, then begin whimpering to get out. He
is still very orderly. He has a huge collection of model cars, each kept in its special
place, often by chronology of when it was built. However, I view this orderliness as a
strength that should be used in efforts to help him move ahead and succeed in life.

Much emphasis was placed in this conference on working with strengths, and
continuing to develop as we all need to do. When people are allowed to become
totally disabled, they then often become in need of total care, which is the most
difficult kind of care to provide. I certainly have dealt with this in my work with totally
unmotivated patients at Bridgewater State Hospital.

Ralf was expelled from school in kindergarten. He was then admitted to a five-day a
week program in the children's unit, Ward Six, at the old Massachusetts Mental
Health Center. He flourished there with the guidance of his teacher, Mrs. McGowan,
to whom I am eternally grateful. I am grateful for all of the wonderful schools he
attended, the Gaebler School at the Metropolitan State Hospital, now closed and
about to be razed to the ground, the Pine Point School in Camden Maine, now also
closed, and finally Riverview on Cape Cod. Sadly, he did not finish high school at
Riverview because of teenage behavior problems, including smoking, which posed a
great danger in the old wood-frame dormitories there.

Ralf has since been kicked out of two GED programs, and failed at his supported
work job, where I think he performed better than the job coach assigned to help him.
It has been discouraging, and now Ralf spends much of the day sitting on the porch
of the group home, smoking, and watching the world go by, on busy Route 3A, the
street where he lives, and the ship traffic in and out of the Fore River Shipyard. Ralf
has also become quite knowledgeable about the shipyard, and the big drawbridge
that has to go up for the big boats coming and going.

Staff at the group home are not long-term. They are very committed to the
residents during their term of employment, but no one seems committed to helping
the residents work toward long-term goals. The GED program Ralf attended last
year was because I took him, every Tuesday and Thursday evening - almost 100
miles per round trip for me. Ralf was setup and scape-goated by another student in
the program. I know he would never pee all over the toilet seat, or throw large
objects into the toilet. He needs to learn how to better defend his reputation, or
make sure others will not come to take a dim view of him. To this end, I found
Stephen Shore's presentation very helpful, Success for People with Autism: By
Using Their Strengths - Just Like Everyone Else.

I bought a copy of Stephen Shore's book, Ask and Tell: Self-Advocacy and
Disclosure for People on the autism Spectrum, and had him sign it for Ralf.

25 Mar 2007 - Correspondence on the Institute of Medicine (IOM) workshop
I received a reply Friday from one of the IOM workshop planners. He will not be able
to attend the workshop, but gave me the name of someone to contact at the IOM
who will. Following is the essence of what I wrote:

Perinatal complications are so often part of the medical history of children with
autism, I can't understand why the effects of anoxia and trauma to the brain are so
completely overlooked. Is this a taboo subject?

Language development is the most serious handicap for children with autism.
Nearly 50 years ago the midbrain auditory pathway (the inferior colliculi) were found
to be selectively damaged by a brief few minutes of asphyxia at birth (Ranck &
Windle, Exp. Neurol 1:130, 1959). The research on asphyxia had been intended to
produce an animal model for cerebral palsy. The lesions found in the inferior
colliculi and other subcortical sites were noted by Ranck and Windle to be similar to
those known to be involved in kernicterus, but without the yellow discoloration
caused by bilirubin infiltration. Nevertheless, they dismissed brainstem damage as
being possibly involved in what was then termed "minimal cerebral dysfunction"
(MCD). No damage within the brain should be dismissed as minimal. In fact brain
maturation did not proceed normally in monkeys kept alive for several months or
years after asphyxia at birth (Faro & Windle, Exp. Neurol. 24:38, 1969). Many of the
abnormalities they reported are similar to those observed in the brains of people
who were autistic as children.

How can these important findings be so badly overlooked in favor of theories of toxic
exposure with at best passing mention of hypothetical disturbances of various
neurotransmitters?

I found out about this workshop late, and was told I might try to speak with
presenters during the breaks. If it is too late to include discussion of birth injury, I
will probably pass this workshop up. I hope another can be planned in the near
future, and that I will hear about it in time to submit ideas for research. I am going to
IMFAR in Seattle with a poster presentation on autism prevalence (2 to 6 per 1000,
according to the CDC) and statistics on respiratory depression at birth (5.2 to 6.2
per 1000, Baskett TF et al. BJOG 113:769, 2006).

I do think that the obstetric protocol adopted around the mid 1980s, of clamping the
umbilical cord immediately at birth whether or not the infant is yet breathing, should
be looked at as a possible cause of both respiratory depression at birth and
increased prevalence of autism. Obstetric texts of the past were explicit in teaching
that the cord should remain intact until the lungs had clearly taken over the most
essential, ongoing, and urgent need of exchanging carbon dioxide for oxygen. This
is becoming a controversial subject, which hopefully will lead to change. See the
most recent issue of JAMA (the articles by Hutton & Hassan, and Oh).

I also wrote a letter today in response to the articles in JAMA. More later on whether
it will be published. If not, I will publish it here.

26 Mar 2007 - Milieu research: Disabled, homeless, and who cares?
Walking to and from the chow hall I am required to walk at the end of the line - you
never want an inmate behind your back. Thus I usually am walking with an inmate
who is lame or elderly. Today on the way back to the admissions building from
breakfast I was walking with a man both elderly and lame. He looked at me and said,
"You're looking really pretty today." Many in the mental health field believe such a
remark should be squelched quickly and firmly - they're always trying for special
favors. But who am I to try to squelch anyone?

"Hey, you just made my day," I replied, then added, "You're looking very handsome
yourself."

"It's a lot easier in here than out on the streets," he replied. "I'm never able to use
shampoo on my hair in the shelters," he added.

The population at Bridgewater always swells during the cold winter months, with
vagrants who trespass and exhibit disorderly behavior for the chance to get in out of
the cold for awhile, or for as long as possible. What kind of mental health system do
we have that continues to close state hospitals in favor of "mainstreaming" patients
into the community?

It is mostly a matter of funding, and that many a J-random, upright and hardworking,
taxpayer has a hard time believing that mental illness is anything more than a myth -
see for example The myth of mental illness: foundations of a theory of personal
conduct, by Thomas S. Szasz. New York : Harper & Row, 1974. Many well-meaning
people believe the testimonials, about those who have recovered from mental
illnesses and become independent and self-supporting, and that they should apply
to anyone.

I had a better look later at the lame elderly patient. He is handsome, with a full head
of glistening white hair - I can see why being able to shampoo his hair is important to
him. The only thing that mars his features is a long jagged scar from the bridge of
his nose and down one side. His chart was in the treatment team office, and I didn't
have time to go lookup if he had suffered a traumatic brain injury, or what caused
his lameness.

As my son Ralf frequently tells me, "Terrible things happen to people." Any one of
us can become suddenly disabled at any time. Do we have the right to be taken
care of? How is it helpful to be euphemistically "mainstreamed" out into the
community, aka forced to rely on availability of a bed in a homeless shelter? These
are the most vulnerable people in our society, and who cares?

27 Mar 2007 - How is it possible to get a medical error changed?
I received an email this morning from someone who wants to bring criminal charges
against the obstetric profession, to bring attention to the protocol for immediate
clamping of the umbilical cord at birth, which came about behind all our backs. We
do trust our doctors, and that they understand the physiology that underlies practice.

How many of us would have thought to ask about umbilical cord clamping? It is a
good thing that more and more information is out there on the internet. It seems
clear that the professional experts are beginning to take notice, and beginning to
gather evidence in favor of "delayed" cord clamping, and the delay seems to be
getting longer, from 30 seconds, to a minute, and in this week's JAMA to two minutes.

It is too bad that evidence gathered in the past - back 130 years in the past is never
mentioned in the recent research papers that keep clamoring that more randomized
controlled trials need to be done.

A few recent articles on cord clamping are:

Philip AGS, Saigal S. When should we clamp the umbilical cord? NeoReviews 2004; 5
(4):e142.

This article concluded with this statement, "As neonatologists, it seems appropriate
to start a campaign to say to the person delivering the baby (obstetrician or
midwife), 'WAIT A MINUTE' before clamping the cord.." I among others responded
online at http://neoreviews.aappublications.org/cgi/eletters/neoreviews;5/4/e142.

Other recent articles include:

Mercer JS, Vohr BR, McGrath MM, Padbury JF, Wallach M, Oh W.Delayed cord
clamping in very preterm infants reduces the incidence of intraventricular
hemorrhage and late-onset sepsis: a randomized, controlled trial. Pediatrics. 2006
Apr;117(4):1235-42.

Ceriani Cernadas JM, Carroli G, Pellegrini L, Otano L, Ferreira M, Ricci C, Casas O,
Giordano D, Lardizabal J. The effect of timing of cord clamping on neonatal venous
hematocrit values and clinical outcome at term: a randomized, controlled trial.
Pediatrics. 2006 Apr;117(4):e779-86.

Levy T, Blickstein I.Timing of cord clamping revisited. J Perinat Med.
2006;34(4):293-7.

28 Mar 2007 - Milieu research, and memory of dancing the tango
I worked in ITU today. One of the patients there had been discharged to a maximum
security prison, but was brought back to Bridgewater last night. He is now 24 but
was only 17 when he first came to Bridgewater, with minimal charges. He now has a
record as a habitual criminal, because of several assaults on other patients and
staff. He is difficult to care for because of his assaultive and, more recently,
self-injurious behaviors. Now he has returned from prison, where he has recently
been kept in isolation (solitarty confinement). His face and arms are badly scarred
from self-inflicted injuries.

Several years ago, he was in my music appreciation group, and could present
problems for the group. He often wanted to hear the same song over and over
again, and would leave the room if he didn't get his way. Other patients in the group
were helpful in getting him to stay and listen to their choices. One of these was my
choice, from a Shakira CD on which I had found a beautiful tango, which I burned
onto the CD I made for the group that week.

"Listen to this," I said, when the young patient was beginning to get disruptive.

One of the other patients got up, came over to me and asked, "Shall we tango?"

"I'd get in trouble for doing that," I said.

Then the young trouble-maker got up and said, "Dance with me!"

So the two patients began to tango around the room, and quite expertly too.

The correctional officer for the group activities area makes regular rounds of all the
rooms. He is one of those correctional professionals who wears a stony scowl on his
face almost all of the time. As he looked through the window, he broke into a sudden
smile and then gave a double thumbs up.

The young patient who returned to Bridgewater yesterday has had life-long seizure
disorder, and I don't see how he cannot be viewed as mentally ill. He is of course a
psychopath, but that is a mental illness, even if it is on axis-II according to the
current edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM
IV-tr). I agree with the newspaper articles, he does not belong in solitary
confinement, even though he is ghastly difficult to work with. He probably deserved
much more attention as a child than he got. I'm sure he was just as disruptive and
difficult as a child, and someone everyone wanted to get rid of as their responsibility,
a "hot potato."

What is wrong with our mental health system? I attended the Westborough State
Hospital Board of Trustees Meeting this evening, and learned that the hospital is to
be closed. A new "state of the art" facility will be built in Worcester, the result of
pure politics over the past two years. Until mental illness is better understood, we
need more not fewer mental hospitals. The prison system is being used as the
junkyard for defective, disruptive people the rest of society just doesn't want
anything to do with. Their very difficult care still needs to be provided by someone.

29 Mar 2007 - Cognitive behavioral affiliation versus medication
At the Westborough State Hospital Board of Trustees meeting last night, in addition
to learning that the hospital is slated to be closed, a presentation was given on
depression and medications used to treat it. Use of chemical substances is the
medical approach to every problem, and one of our trustees questioned if there
aren't alternative treatments. He pointed out the horrible side effects of many of
these medications, and that many people are beginning to question whether the
high incidence of adult-onset diabetes, or "metabolic syndrome," among psychiatric
patients might be caused by chronic long-term use of these unnatural substances.

Cognitive-behavioral therapy and psychotherapy were briefly noted as alternative
treatments. Psychotherapy, probing of past experience, was the original "talking
therapy," and its effectiveness is clearly dependent upon the helpfulness of human
interaction. Cognitive-behavioral therapy is a refinement of psychotherapy that
goes beyond just digging up old hurts, to striving to understand how to best pick up
and carry on. It is an improved form of human interaction, based on shared problem
solving. The therapist must identify with the patient's perspective, and explore
alternative viewpoints and approaches to deal with aspects of the human condition
that we all have to deal with, many times during our lives -- this is truly based on the
human capacity for "theory of mind," or instinctive understanding what another
person is thinking and feeling. A lack of "theory of mind" is what many people
believe is the core deficit in autism.

One book that has been very meaningful to me is Jean Baker-Miller's Toward a New
Psychology of Women (Boston: Beacon Press, 1986). It could (maybe should have
been) titled simply "Toward a New Psychology," because it describes the need we all
have for true empathic affiliation, which I have certainly found useful to keep in mind
in my work with patients who are all male, and quite a few at Bridgewater can be
viewed as on the autism spectrum, or having Asperger's syndrome.

I have found taking a cognitive-behavioral approach useful in interactions with my
son, Ralf, who has the DSM diagnosis of PDD-NOS -- and when he saw that in his
chart, he immediately asked, "What's PDD-NOS supposed to mean?" Still, in the
group home where he lives, they continue telling me about the behavioral plan they
have him on -- a system of rewards and punishments. Because his house is being
sold, and everyone will probably have to move out anyway, this may be a good time
to look for another living arrangement. He needs a good supported work program
too, and at some point to try the GED test. He is very systematically going through
the Princeton Review GED workbook I gave him, and is currently quite focused on
the algebra section.

I usually get together with Ralf on my way home from Bridgewater, and we go to the
library to study together. He is amazingly cheerful considering what he has to put up
with in his group home. He makes me proud, and I continue to work with him using
what I hope is a cognitive-behavioral approach. He deserves to continue to have
hopes for the future, as we all do. The philosophy at the group home where he lives
seems to be simply long-term maintenance, using behavior management.

31 Mar 2007 - Patient suicide
As we arrived at work this morning, we were informed of a suicide that happened last
evening on one of the admissions units. The patient had hung himself from a
shower head in the bathroom. He was still alive when he was found, but died later at
the hospital. It happened when most of the other patients were in line to receive
evening medications, which becomes the focus of attention around eight o'clock. At
the Westborough State Hospital Meeting Wednesday, we were told that 47
bathrooms were being revamped for patient safety, to help prevent this kind of
incident.

Meanwhile, as often happens, two other patients in the admissions building created
more chaos during the code called for the hanging. One patient from the downstairs
unit ran out the door. He was quickly apprehended and take to the Intensive
Treatment Unit (ITU), Upstairs, where the hanging took place, another patient
assaulted a correction officer, and was also taken to ITU.

I worked in ITU today, and had to deal with these two patients among others. The
patient who assaulted an officer claims he only shoved him, but shoving is not
acceptable behavior -- not in any interpersonal relationship or group setting. He
further claimed he was raped by one of the officers. He was therefore (per policy)
transported up to the Rape Crisis Center at Beth Israel Hospital in Boston today. I
feel so sad about this patient, because he was at Westborough State Hospital for
several years, and doing very well there. Then, like my son Ralf, he was discharged
to a community group home, where he got into trouble and ended up back at
Bridgewater. It could happen to Ralf too.

One of our psychiatrists attended the annual UMass Correctional Health Conference
yesterday, where one of the speakers pointed out that the Department of
Corrections employs more psychiatrists than the Department of Mental Health.

"How irresponsible," she said, and she is right.

It is so much more costly to care for the mentally ill in a correctional environment,
with correctional staff in addition to medical and psychiatric staff -- incarceration is
the costliest kind of long-term-care, and almost all psychiatric patients will need
some form of long term care. Closing the mental health hospitals is not saving tax-
payers' dollars, and the care in group homes does not begin to measure up to that
provided by the long-term professional staff who work in the state hospitals.

I am so sorry I did not know about this conference, or I would have gone. The
psychiatrist said she did not see any of our nurses there. I did not see the event
posted on any of the bulletin boards we regularly read. In the future I will try to stay
informed about conferences sponsored by my employer.