Autism/Asperger Info
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Patient's Bill of Rights
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In 1943, Dr. Leo Kanner, an Austrian doctor working at Johns Hopkins,
published a paper describing a group of children he had been working
with, in which he used the term "autism". In 1944, Dr. Hans Asperger,
also an Austrian doctor, who was, however, working in Germany, also
published a paper on what he called "autism". The Kanner children are
now thought to have been both autistic and retarded, whereas the
Asperger children were much higher functioning, and of normal
intelligence. Today, it is accepted by the medical community that both
men were describing the same phenomenon. It is interesting that they
both chose the same name for the syndrome. Kanner's paper received much attention...however, the hospital where Asperger
had been working was damaged during WWII, and some of Asperger's work was lost. In
addition, his work was not well known in the English-speaking world until Lorna Wing
published an English discussion of the syndrome in 1976 (_Early Childhood Autism_).
Around 1991, Uta Frith published her book _Autism and Asperger Syndrome_ which
printed the first English translation of Asperger's paper, plus other papers by
researchers in the field. It is only since that time that Asperger's work has begun
to receive as much attention as Kanner's, which explains why low-functioning autism
is much better known than high-functioning (and/or "Asperger's Syndrome").
In 1994, Asperger's Syndrome appeared in the DSM for the first time. The DSM-IV
recognizes autism, Asperger's Syndrome and PDD-NOS (Pervasive Developmental
Disorder - Not Otherwise Specified) as being different but similar diagnoses (the
so-called "autistic spectrum"). The main diagnostic differentiation between
autism and AS is whether speech development is delayed ("autism") or not ("AS").
Otherwise, the diagnoses are practically identical. Thus, there is not a
differentiation based on intelligence (i.e., IQ scores) between autism and AS.
Some writers identity AS with "high-functioning autism", however, not all
high-functioning autistics are Aspergers. Dr. Temple Grandin, probably the
world's best-known high-functioning autistic, had delayed speech development,
but has earned a doctorate and is considered one of the world's authorities on
the design of commercial animal handling facilities, thus, she is a
high-functioning Kanner autistic, not an Asperger.
Other researchers have suggested that a very practical differentiation between
autism and AS would be the presence or absence of a social drive. In most cases,
the individuals on the autistic spectrum who have a social drive are also the
ones with no speech development delay, thus, this is not inconsistant with the
DSM-IV. (I tend to favor this definition, as the presence or absence of a social
drive probably has a more profound effect on the psychology, as well as the
happiness, of the spectrum individual, than any other factor. I assert that it
may indeed be the reason that some individuals demonstrate delayed speech, and
some do not.)
Whereas researchers have focused on autism (the entire spectrum, not just Kanner's)
as being a social communication disability, the high-functioning autistics themselves
seem to focus on sensory hyper-sensitivity as being the primary feature of the
disorder, with impaired socialization being a result, not a cause. (I also tend
to agree with this view.) The jury is still out on this.
Thus, in my writing I tend to refer to anyone on the spectrum as an "autistic",
a high-functioning autistic who is not Asperger as a "high-functioning Kanner
autistic", and AS people as just "Aspergers", i.e., "autistic" includes both
Kanners and Aspergers (as well as PDD-NOS), both high-functioning and
low-functioning. Despite the fact that every autistic is different from every
other one, the similarities between people on the spectrum are far greater than
their similarities to those not on the spectrum.
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The Autism Rights Movement
excellent article with a moderate viewpoint by non-spectrum person
AWARES.org conference center
Free International online autism conference, October 17 - 21, 2005; online conference, over 30 experts; must apply for
password to access this site
Article about the above conference
Bereavement and Sorrow
The stages that everyone goes through after a diagnosis of a spectrum disorder has been made
Autism Advocacy By autistics, for autistics
Intervention for parents of autistic children
helps not only the parents, but even the children, function more normally I've been saying this over and over again;
"Education of the neurotypical helps autistics more than education of the autistic", and this study bears that out
The True Meaning of the Auton Decision The current status on the Canadian court
battles between parents and the government to control autistics without their input
Study: Eye contact triggers threat signals in autistic children's brains
Meditation Gives Brain a Charge, Study Finds Washington Post;
copied here in case the original disappears
When does autism start? Excellent article summing up the "state of the art" in autism research (appeared in the Newsweek section of msn.com)
Neurodiversity Excellent site with a massive amount of information on
many subjects
This Way of Life; was Growing Joel
an excellent introduction into what it's like to BE autistic, particularly a
high-functioning autistic adult
Wrong Planet.net spectrum community with
forums, chatroom, articles, FAQs, blogs etc.
Autism Spectrum Disorder
Cerebellar Mechanisms of Motor Learning The Mauk Lab
Cerebellum
and lack of coordination
Center for the Study of Autism
Asperger Syndrome Coalition of the United States
TEACCH - Sites of Interest
MoMA - Moms on a Mission
Autism Research Institute
AutismWeb: A Guide for Autism and PDDs
AS-IF (Asperger Information)
Center for the Study of Autism
ACDate: A Meeting Place for People on the Spectrum
Future Horizons publications and
conferences
CDC Autism Information Center
Neanderthal theory of autism
Temple Grandin discussion Meds, sensitivities, stimming, career assistance
The Definition and Prevalence of Autism: A Review by Lorna Wing
Asperger syndrome: a clinical account
by Lorna Wing
Was autism the secret of (Andy) Warhol's art?
Einstein and Newton "had autism"
Sedation of the autistic patient for dental procedures PubMed abstract
California's Autism Rate Doubles May 14, 2003
The Autistic Twins exerpted from Oliver Sacks book
The Man Who Thought His Wife Was a Hat
Executive Dysfunction
Executive Dysfunction strategies
Executive Dysfunction and Career
Learning Discoveries Psychological Services
Ostracism: The Cruel Power of Silence (Part 1 of 2)
Ostracism: The Cruel Power of Silence (Part 2 of 2)
Epidemiologic Evidence Is Insufficient To Prove There Is No Link Between The MMR Vaccine And Autism British law
Donna Williams
Author of Nobody Nowhere & Somebody Somewhere
The Uncanny Valley
Why people's reactions become more negative the more "human" something appears
NEW:
Diagnostic Confusion in Asperger Disorder
Dr. Tsai is a Professor of Psychiatry and Pediatrics at the University
of Michigan Medical School and the Director of the Developmental
Disorders/Autism Program at the University of Michigan Health System
Diagnostic Criteria for 299.80 Asperger's Disorder from DSM-IV 1004
see also: 299.00 Autistic Disorder and
299.80 Pervasive Developmental Disorder - NOS (not otherwise specified)
Diagnostic Criteria for 299.80 Asperger's Disorder from DSM-IV 1004
The "official" definition of Asperger's in the U.S. DSM-IV
Diagnostic Criteria for Asperger's Syndrome from Gilberg & Gilberg (1989)
Diagnostic criteria for Asperger's Syndrome from Szatnmari, Bremner, and
Nagy (1989)
"Diagnostic Criteria of Asperger's Syndrome" from ICD-10 (World Health
Organization, 1993)
DSM IV Diagnostic Codes Adjustment/Affective, Delirium/Dementia,
Learning, Retardation, Pain, PDD, Personality, Sleep, Somatization, and
Miscellaneous
Differences between AS and HFA
AS - Guidelines for Assessment and Diagnosis Yale Child Study Center
R.K.Ozbayrak, MD's AS FAQ
Reasons for a diagnosis especially for adult
What is AS? "Seeking Diagnosis of AS" is further down the page
Adult Diagnosis Procedure UK, but very helpful in other countries, too;
good advice
Seeking diagnosis in Texas, see MHMR in Texas Resources
Suggested Reading
Bibliography
Post-diagnostic support for adults with Asperger Syndrome
Principles of good community care assessment;
Employment services, benefits, housing options, health services (UK)
Oddizm's Autism
page Oddizm is a woman with AS, who is mother to an AS adult
She has some hilarious t-shirts and other autism themed merchandise
Frank Klein several excellent articles which I agree with wholeheartedly
Do girls have a different expression of the syndrome? from asperger.org
Aspergrrrlz! for girls with Aspergers
Why do more boys than girls develop autism?
The Pattern of Abilities and Development of Girls with Asperger's Syndrome by Tony Attwood
Asperger’s Syndrome in Women: A Different Set of Challenges? By Catherine Faherty
Autism Society of American
Center for the Study of Autism Portland, Oregon
NIMH
National Institute for Mental Health (some of this information is quite old and/or
only applies to low-functioning autism, i.e., "75 to 80 percent of people with autism
are mentally retarded", whereas some researchers estimate that there are 15 times as
many high-functioning [non-retarded] autistics as there are low-functioning)
National Alliance for Autism Research
FEAT Families for Early Autism Treatment
Autism National Committee
Autism Network International
by autistics for autistics
NINDS National Institute of Neurological Disorders and Stroke
Google Asperger
Google autism
Yahoo Asperger
Yahoo autism
AS Support Network Australia
Aspergian Islands
Texas Disability Resources/Family Village
Google - Texas support groups
MHMR Texas
Department of Mental Health and Mental Retardation
Texana MHMR
MHMR in Austin, Colorado, Ft.Bend, Matagorda, Waller, Wharton counties
Texas Council of Community Mental Health Mental Retardation Centers, Inc.
list of MHMR Departments in Texas
Note: MHMR will do an assessment for PDD/autism/Asperger (for free) through the
Mental Retardation department (even for non-retarded persons). This is the best way
I've found to get a diagnosis in Texas. (and possibly in other states?)
Texas Council for Developmental Disabilities
Texas Rehabilitation Commission
Rehabilitation Council of Texas
Texas Home-of-your-own Coalition
Houston Home-of-your-own Coalition
Texas Department of Housing and Community Affairs
SAMHSA's Nat'l Mental Health Info Center Texas Resources
Orion Academy
California high school for students with Aspergers and NLD (non-verbal
learning disorder)
CDC Autism Info Center state activities
Dr. Temple Grandin
Evaluating Effects of Meds
Interview with Dr. Temple Grandin about half-way down the page, an
extremely interesting note about the "two circuit" action of
anti-depressants...a must-read
From
An Inside View of Autism by Temple Grandin:
"Both Dr. [Paul] Hardy and Dr. John Ratey (personal communication,
1989) have learned that very small doses of these drugs must be used.
Too high a dose can cause agitation, aggression, or excitement, and too
low a dose will have no effect."
Pharmacological interventions (list)
Children with Autism & PDD: Potential benefits & risks of Meds
extensive table with detailed list of drugs
Use of Antidepressant Drugs in Asperger's/Autism/PDD Revisited
Patient Centers
FDA Dockets Management
TASK page on meds
A double-blind, placebo-controlled study of the efficacy of transdermal
clonidine in autism (catapres) [high blood pressure med]
Clonidine Provides Safe, Effective Sedation to Children with
Autism/PDD
Pediatric Pharmacology Tenex (guanfacine) [high blood pressure
medicine] used for overactivity and impulsiveness in autism, and other
studies (risperdol/Risperidone and Ritalin)
Risperdal Indications
Psychiatric Medications and Autism
To Drug or Not to Drug?
Use of Prozac and other SSRI antidepressant drugs in Autism/PDD
Medications and Autism
Study Confirms Secretin No More Effective Than Placebo in Treating
Autism Symptoms
Study Shows Secretin Fails to Benefit Children with Autism
Two drug therapy algorithms target autism's problem behaviors
Autism for me English page by a Japanese medical student studying
in Finland...awkward, but some interesting points
Vitamin B6 and Magnesium Dr. Stephen M. Edelson, Ph.D.
Vitamin B6 (and magnesium) in the treatment of autism
Dr. Stephen M. Edelson, Ph.D.
Di-methyl-glycine (DMG) Dr. Stephen M. Edelson, Ph.D.
B6, DMG, etc. dosages Dr. Bernard Rimland, Pd.D.
DMG for autism Dr. Bernard Rimland, Pd.D.
Treatments
Sleep problems and autism
The Non-verbal Dictionary
Sleep Deprivation in Asperger Syndrome
Journal SLEEP: Children with Asperger Syndrome More Likely to Have Sleep Problems
American Academy of Sleep Medicine 11/01/2007
A laboratory study of sleep in Asperger's syndrome
Insomnia in school-age children with Asperger syndrome or high-functioning autism
Sleep disturbances and correlates of children with autism spectrum disorders
Sleep Problems with Autism and Other Related Conditions
Are clinical features not included in DSM-IV or ICD-10 associated with AS?
Study: Sleep disturbances in 48.3% of AS persons vs. 23.3% in controls
"Furthermore, it was shown that persons with AS were
hyperresponsive, (detecting texture, taste and temperature
differences), and that they had difficulty quieting down for sleep
because they would have high detection of stimuli to grab their
attention." ((Dunn W, Myles BM, Orr S: Sensory processing issues
associated with Asperger syndrome: a preliminary investigation. Am J
Occup Ther 2002, 56:97-102.))
"Abnormal sleep patterns have been reported in up to 65 percent of
children with autism spectrum disorders." ((Taira M, Takase M, Sasaki
H: Sleep disorder in children with autism.Psychiatry Clin Neurosci
1998, 52:182-183.))
"In a hospital-based series by Tani et al. on twenty adults with
AS, the sleep questionnaire revealed insomnia in 90 percent and the
sleep diary in 75 percent." ((Tani P, Lindberg N, Nieminen-von Wendt T,
von Wendt L, Alanko L, Appelberg B, Porkka-Heiskanen T: Insomnia is a
frequent finding in adults with Asperger syndrome. BMC Psychiatry 2003,
3:12-28.))
Sleep Deprivation Promotes Insulin Resistance
Short Sleep Duration Linked To Obesity, Consistently and Worldwide
Adults who slept less than 6 hours had the highest rate of obesity
(33%) and adults who slept 7 to 8 hours had the lowest (22%).
Obesity Tied to Lack of Sleep, Say Researchers
Association of sleep time with diabetes mellitus and impaired glucose tolerance
A sleep duration of 6 hours or less or 9 hours or more is associated with increased prevalence of DM and IGT
CDC: Sleep and Sleep Disorders
Insufficient sleep is associated with a number of chronic diseases
and conditions, such as diabetes, cardiovascular diseases, obesity, and
depression
Autism and the Gluten-Free / Casein-Free Diet
Celiac.com
Enterolab
independent lab which will do testing for anyone (Internet and mail)
Gluten Intolerance Group of North
American
Merck Manual celiac disease
Celiac Disease Study Guide prevalence and diagnosis
Celiac Sprue Association
US
Activation of the inflammatory response system in autism
"Autistic patients may suffer from gastrointestinal tract disturbances
such as abdominal pains and diarrhea."
Journal articles regarding autism and gastrointestinal abnormalities
Testimony before Congressional Oversight Committee on Autism and
Immunization by Arthur Krigsman, MD
study of autistic children's gastrointestinal symptoms
Autism Society of America; Central California Chapter
Study Lends support to Leaky Gut Theory of Autism:
"Dr. Simon Murch said on behalf of the group, 'Immunohistochemistry
confirms a distinct lymphocytic colitis in autistic spectrum disorders' "
Autism Medical news
"Researchers have confirmed a distinct lymphocytic colitis in autistic
spectrum disorders in which the epithelium appears particularly affected,
and have reported their findings in March's Journal of Pediatrics." (2001)
Gastro.net; Microscopic colitis
including collagenous colitis & lymphocytic colitis
Microscopic/Collagenous Colitis FAQ including lymphocytic colitis
"Patients sometimes seek treatment for an elusive form of arthritis
as much as ten years prior to problems with diarrhea. This atypical
arthritis can affect the back, hips, and sometimes the ribs. (This is
EXACTLY what happened to me)
FAQ about Microscopic Colitis
NIH Discovers Another Genetic Link to Autism
NICHD Funded Researchers Discover Gene for Rett Syndrome
Researchers Identify Gene Common to Many Autism Cases
Researchers Find New Insights into the Genetic Foundations of Autism
Chromosome deletions in autistic patient point to possible genetic links
Autism and the Limbic System"> Dr. Stephen M. Edelson
A Look at the Amygdala FEAT archives
The Cerebellum and Autism
Choosing the Right Job for People with Autism or AS Dr. Temple Grandin
Tips for Teaching High-functioning People with Autism
Mainstreaming doesn't always work
Living With Executive Dysfunction
Many HFAs and Aspergers find work as computer programmers.
The H-1B work visa exists so that employeers can import and hire
programmers from other countries, often at lower salaries than they pay
American programmers. They claim that there is a "shortage" of talent.
The following paper was presented to the U.S. House Judiciary
Committee, Subcommittee on Immigration on April 21, 1998:
Debunking the Myth
of a Desperate Software Labor Shortage (note: 132 pages long...you might want
to check the following summaries)
My summary of some points made by the above paper
Dr. Matloff's summary
Supplementary Materials
for Professor Matloff's "Debunking the Myth of a Desperate Software Labor Shortage"
IT Workforce Data Project Report Highlights Commission on Professionals in Science and Technology
Core Occupations of the U.S. Information Technology Workforce
Note: The following articles are from Computerworld, THE industry
magazine for IT (Information Technology) (including computer programming)
'My coding just flies' autistic programmers; 4-14-97
Autistics offer unique skills to IS 4-21-97
"Offshore outsourcing" is the practice of sending programming work across
the Internet to companies outside the U.S. Right now, the bulk of the
work is being sent to India, where an average programmer makes $6,400
per year.
Exporting Jobs Saves IT Money 3-15-99
The Invisible Workforce autism in data processing jobs 5-21-2000
Outsourcing Debate Driven by Cost, Agility 3-3-2003
Exporting IT Jobs 4-28-03
Magna Cum Unemployed 4-28-03
Offshore's Rise Is Relentless 6-30-03
A 7-22-03 Houston Chronicle article titled "IBM looks to move jobs
abroad" stated "...senior IBM officials told their corporate collegues
around the world in a recorded conference call that IBM needed to
accelerate its efforts to move white-collar, often high-paying, jobs
overseas..."
Gartner Says 5% of Corporate IT Jobs Could Go Offshore by 2005 8-4-03
Jobless push for visa reform "will code for food" 8-11-03
As if things weren't bad enough, the Sept. 15th issue of Computerworld
very helpfully contained a 14 page "Offshore Buyer's Guide"..."A
country-by-country guide to offshore and near-shore IT outsourcing"
with information about each country including what the "average programmer"
makes there, and what the pluses and minuses are for each country.
"By next year, 80% of CIOs (Corporate Information Officers) will
have marching orders to take some IT (Information Technology) offshore."
Average programmer salary per year:
Russia: $7,940
Phillipines: $7,250
India: $6,400
Brazil: $5,950
China: $5,850
Mexico: $5,150
Vietnam: $4,110
Contents of the Outsourcing Special Report 9-15-03
IT Unemployment Hits 'Unprecedented' Level 9-22-03
The Human Factor Frank Hayes of Computerworld admits "...they just
don't like the IT department" is the real cause of outsourcing, not money,
because of their "lack of people skills"....autism?
Bush Administration Won't Impede Offshore Outsourcing 9-29-03
Businessy IT Frank Hayes of Computerworld: "....what will get us
jobs is the fact that we are like them. And we understand them". The
only advice out-of-work programmers are being given is to "retool
yourselves as 'people persons' ". Impossible for autistic programmers.
10-27-03 Computerworld printed 7 letters all protesting H1-B and
offshore outsourcing
Down, Not Out IT labor force down 150,000 jobs 10-27-03
Job agency hires foreign help "An Indiana state agency chartered to help
unemployed residents find jobs began a controversial IT project this
month with the US subsidiary of an offshore developer, which plans to
bring in programmers from India to work on the project." 11-17-03
Houston Chonicle, 12-24-03: "U.S. corporations are picking up the
pace in shifting technology jobs to India, China, and other low-cost
centers, but they are keeping quiet for fear of a backlash." Where
companies used to publicize such moves as they assumed it would be
attractive to potential stockholders, now companies both in the U.S.
and the outsourcing firms in other countries have become secretive.
In other words, no matter how bad it looks, the reality is actually
much worse.
ITAA's Dream Job The same lobbying group that published the report that the U.S.
was facing a "shortage" of programmers, and thus needed the H-1B visa, is now saying
that offshoring will increase jobs in the U.S.
The President's New Freedom Initiative for People with Disabilities: The 2004
Progress Report President Bush wants to screen all American children for
mental and emotional illnesses, and mainstream them into society. i.e., he wants to
identify all the austistics, getting jobs for the unemployed, while refusing to help
the currently employed autistic programmers keep THEIR jobs. WHAT?!
The Americans with Disabilities
Act of 1990 text
Civil Rights of Students with Hidden Disabilities
under Section 504 of the rehabilitation Act of 1973; US Department of
Education
Avoiding Unfortunate Situations
advice to police on how to deal with autistics [excellent!]
Senate approves of measure preventing insurance providers from
denying coverage to autistic patients
Mental Health Patient's Bill of Rights
A Patient's Bill of Rights
Patient's Bill of Rights
Florida Osteopathic Medical Association
Introduction to Adult Patient Bill of Rights
Definition of Developmental Disabilities State of Texas
Definition of Developmental Disability (same info)
Social Security Rulling 96-3p
considering pain and other symptoms
in determining whether a medically determinable impairment is severe
Determining Disability Title 20 - Employees' Benefits; Chapter III -
Social Security Admin.; Subpart P - Determining Disability & Blindness;
Sec. 404.1520 Evaluation of disability in general
Caselaw search page for U.S. laws (codes)
General Provisions of Programs for Individuals with DD
Laws: Cases and Codes : U.S. Code : Title 42 : Section 15001
Findings, purposes, and policy
Laws: Cases and Codes : U.S. Code : Title 42 : Section 15002
Definitions
Laws: Cases and Codes : U.S. Code : Title 42 : Section 15004
Responsibilities of the Secretary (of Health and Human Services)
Laws: Cases and Codes : U.S. Code : Title 42 : Section 15005
Reports of the Secretary
Laws: Cases and Codes : U.S. Code : Title 42 : Section 15007
Employment of Individuals with Disabilities
see: Rehabilitation Act of 1973 (29 U.S.C. 791 et seq.)
and: Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et deq.)
Laws: Cases and Codes : U.S. Code : Title 42 : Section 15009
Rights of Individuals with developmental disabilities
Laws: Cases and Codes : U.S. Code : Title 42 : Section 15021
Purpose of Federal Assistance to State Councils on Developmental
Disabilities
Chapter 6a - Public Health Service - NIH, NRI, and autism
see: Subchapter I, Sec.247b-4, 247b-4b through 247b-4e; 284 through
284b; Subchapter III, Section 284g, etc.
Jo Anne B. Barnhart, Commissioner, Social Sec. Admin. v. Pauline Thomas
No. 02-763
Supreme Court case...Pauline Thomas was first denied SSI then had it re-established
by the Third Circuit Court of Appeals...the Supreme Court has reversed that decision.
Barnhart (Commissioner for Social Security) argued that the yardstick for disability
is the inability to do any job one had performed in the past. Pauline Thomas was
able to perform the duties of operating a manual elevator, but her job was phased
out, and now she can't find another job as sedentary as that one. SS argues that
it is not their place to determine if there is currently a job in existance that
the woman can do, only that she can still do the job she once had, and that this
means she is not "disabled". On November 12, 2003, the Supreme Court
agreed, based on the way the SSI law was written. (To me, this means
that if someone already has been designated as "disabled", it is in
their best interest NOT to find any work and perform it, as it may
invalidate them from ever receiving SSI again, barring a deterioration
in their health or capabilities.)
FindLaw U.S. Supreme Court Oct.2003 cases
See: Webring.Org Search on "autism" or "Asperger"
The Institute for the Study of the
Neurologically Typical What if being non-autistic was defined in the
same terms as autism?
The Discovery of "Aspie" Criteria by Attwood and Gray
What if Asperger were defined by strengths instead of weaknesses?
The Geek Syndrome Wired Magazine;
Autism is surging among the children of Silicon Valley
Is AS/HFA necessarily a disability? Another perspective
This is an animation-free site designed for visually sensitive and ADD persons.
January 6, 2013
Listen....
There is a knocking on the skull,
An endless silent shout
Of something beating on a wall,
And crying, "Let me out!"
That solitary prisoner
Will never hear reply.
No comrade in eternity
Can hear the frantic cry.
No heart can share the terror
That haunts his monstrous dark.
The light that filters through the chinks
No other eye can mark.
When flesh is liked with eager flesh,
And words run warm and full,
I think that he is loneliest then,
The captive in the skull.
Caught in a mesh of living veins,
In cell of padded bone,
He loneliest is when he pretends
That he is not alone.
We'd free the incarcerate race of man
That such a doom endures
Could only you unlock my skull,
Or I, creep into yours.
- - Ogden Nash (1902-1971)