ADVOCACY

Autism as a
Global Human Rights
Violation Issue
9PK<I@8II8E>8

“There needs to be a global recognition of the fact that autism is a pandemic problem and it
doesn’t seem to be any particular ethnicity, economic condition, racial background or country of
origin that has a higher or lesser degree of autism. It is as much of an equal opportunity condition
as the world has ever seen,” observed Lee Grossman, President and CEO of the Autism Society of America.

D
avid Humphrey, Vice President have been in autism institutions where having a variety of conditions including
of the Autism Coalition for these children are literally warehoused in cerebral palsy, autism, Down syndrome,
Treatment and Board member of shocking conditions. You are permanently mental retardation, and spina biÞda.
the Autism Society of America and the changed from the experience of walking Laurie observed the many children
Autism Research Institute, reports the through an institution and seeing children in these institutions who exhibited
following estimates on autism in selected with autism - some tethered to their beds behaviors associated with autism. This
Asian countries: China 2,500,000; India lying in fecal matter as a result of chronic has not only been happening in Serbia;
2,000,000; Indonesia 350,000; Japan diarrhea and untreated medical problems. MDRI has written reports citing the
300,000; Philippines 250,000; Thailand Warehoused children are all too common conditions for this population in Kosovo,
180,000. According to Dave, ÒWhat is in many countries since families do not Turkey, Russia, Romania, Mexico, Peru
crushing for families in the US - with have the resources to have one parent and Argentina, as well as a host of other
LoriÕs children:
pretty Connor and- Charlotte
good resources is unbearable stay with the child at home.Ó countries. Laurie related that these same
in countries where families have very Laurie Ahern, Associate Director of things are happening to children and
limited resources.Ó
of him at He continues to say, Washington DC-based Mental Disability adults with autism and other conditions
news photo
ÒGovernments in most
my desk
ofpart
as a reminder.
these countries
legislators.
Rights
Asking their receptionist
International
for Drownings typically
Being a child advocate and of the the right staffer. Getting(MDRI)
voicemailand andco- a in these countiesÉ the same deprivation
virtually Autism
National ignore Association,
the problems itÕsof autismlike
children authorborn
callback of theoutreport entitled
of obligation moreTorment
than happen
and neglect ofafter
medicalatreatment,
child
because
this they the
that instill justdesire
canÕttodeal
notwith
give the
up. Not Treatment:
compassion. SerbiaÕs
All reasons Segregation
to procrastinate. therapies and any human contact. Even
enormity of the problem. We were in andaAbuse
Then few days of later
Children and aAdults
I noticed different with
the autism
human contact ofhaspersonal bottle
ANorth
NEWKorea ALERT onSYSTEM
a missionISwith Mercy
CREATED, withonDisabilities,
alert my TV screen. travelled
A Silver to Serbia
Alert. feeding is too often a luxury not able to
CorpsNO
BUT and met with government
CHILDREN ALLOWED ofÞcials. and observed
Although IÕd neverthe conditions
heard under
of it, I understood wandered.
be In theleftpast
provided, with bottles propped
They
It was claimed
early Maythat whenthere
I waswas no autism
reminded of which
what institutionalized
it meant. persons
A missing senior, likelyÒlived.Ó
with up on the side of the crib. Neglected
the AMBER
in North Alert.InOne
Korea. had been issued
a follow-up meeting AlzheimerÕs.
According to this report: ÒMDRI four years
children alone,
are left to at
self-abusive
in ourAmnesty
with
evening
area Ð theInternational,
newscast.
details crawledwe
I mustÕve
told the grim reason: At the Þrst signslet
over
out a
our
were
sigh
The Silver Alertfound
investigators
mywith
statedisabilities
became
of North Carolina
effective
children
in 2007.
and
tied to beds or never
in adults
ItÕs a
least 14such
behaviors, children with
as hitting themselves,
chewing their Þngers, or gouging their
since Christian, my husband,
of autism, children are taken from theirasked what was system that notiÞes the public about
allowed to leave a crib Ð some for years missing autism
own eyes. under age 12
wrong. I explained what happened
parents to remote ÔtreatmentÕ institutions to Benjy, endangered
at a time.Óadults who suffer
Inhumane andfrom dementia
degrading Children like these in institutions in
and
where howtheir
an AMBER Alert couldÕve
life expectancy made
is less than ortreatment
other cognitive
in Serbian institutionsasviolates
impairments, such haveanddied
Serbia other as a result
counties were observed
a2 difference. He walked to
years. Most starve. In decisions tothe computer, AlzheimerÕs disease.
Article 3 of the EuropeanThe only downside
Convention to to be tied to their cribs for years at a
looked
allocateuplimited
the AMBER
food Alert and wrote
reserves, the autism the system? No children allowed.
on Human Rights. In a phone call with of wandering.
time. These children had a variety of
down the lawmakers most involved
centres are the lowest priority. Even with its
in It prompted
Laurie Ahern, meshe
to call one ofthat
related the staff
names diagnoses, including autism. The photos
enactment.
ÔSecond WorldÕ countries with strong onmembers
my list Ð Senator Dianne Feinstein,
at the Serbian institutions a that follow depict a teenage boy (right)
IÕd been down
economies this roadcan
conditions before. Calling - I
be horrible California Democrat who had
described the restrained children as helped our and a young girl (left).
36 Reprinted with
AUTUMN 2008 permission
THE AUTISM FILEfrom The Autism File. Autumn 2008. Info@autismÞle.com.
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AUTISM FILE AUTUMN 2008 51
 Photos by Marc Schneider, 2007

One of the most compelling quotes

reported by an MDRI investigator who
visited the Stamnica Institution in Serbia
states, ÒI looked into the crib and saw a
child who looked to be 7 or 8 years old.
The nurse told me he was 21 and had
been at the institution for eleven years. I
asked her how often he was taken out of
the crib and she said,
‘Never, he has never been
out of the crib in 11 years.’
The lights were off and it
was dark in the room in
The MDRI report includes the following statements related to the rights that
should be afforded to these individuals:
n
All human beings are born free and equal in dignity and rights:
Universal Declaration of Human Rights, Article 1 (General Assembly of the
United Nations, 1948).
n State Parties to this Convention recognize the equal right of all persons
with disabilities to live in the community, with choices equal to others É
and their full inclusion and participation in the community:
Convention on the Rights of Persons with Disabilities, opened for signature
March 30, 2007, Article 19.
n No one shall be subjected to torture or to inhuman or degrading treatment
or punishment:
European Convention on Human Rights, Article 3

the middle
LoriÕs children: of and
Connor theCharlotte
day. The n For the purposes of this Convention, the term torture means any act by
smell of urine and feces was which severe pain or suffering, whether physical or mental, is intentionally
inßicted É for any reason based on discrimination of any kind, when
overpowering
news photo of him at my …desk
There was
as a reminder.legislators. Asking
such paintheir inßicted by orDrownings
receptionistisfor
or suffering at the instigationtypically
of or with the
Being a child advocate and part of the the right staffer. Getting voicemail and a
no stimulus of anyitÕskind: consent or acquiescence of a public ofÞcial or other person acting in an
National Autism Association, children like
callback born out of obligation more than
ofÞcial capacity. happen after a child
no music, conversation,up.
this that instill the desire to not give compassion. All reasons to procrastinate.
Then a few days later I noticed a different with autism has
UN Convention against Torture and Other Cruel, Inhuman or Degrading
Treatment or Punishment, article 1(1) (emphasis added)
television
A NEW ALERT or radio,
SYSTEM only
IS CREATED, alert on my TV screen. A Silver Alert.
BUT NO CHILDREN ALLOWED
darkness and silence.” Although IÕd never heard of it, I understood wandered. In the past
n State Parties recognize that a mentally or physically disabled child
It was early May when I was reminded of what it meant. A missing senior, likely with
the AMBER Alert. One had been issued should enjoy a full and decent life, in four
AlzheimerÕs. years
conditions whichalone, at
ensure dignity,
promote self-reliance and facilitate the childÕs active participation in the
in These
our areainhumane
evening
in
Ð the details
newscast.
contorted
crawled over
conditions
and Iatrophied
our
result
mustÕve letlimbs
out a and
sigh
The Silver Alert became effective in
community.
my state of North Carolina in 2007. ItÕs a
least 14 children with
Convention onpublic
the Rights of the Child, Article 23(1).
since Christian,
bones, my husband,
breathing and otherasked what was
physiological system that notiÞes the about missing autism under age 12
wrong. I explained
problems, as well what happened to Benjy,
as staggering endangered adults who suffer from dementia
and how an AMBER
psychological Alert couldÕve made
torment. or other cognitive impairments,
As mentioned such
earlier, these as
horriÞc have died
According asHumphrey,
to Dave a result ÒThis
a difference.
AccordingHe to walked to the computer,
Dave Humphrey, ÒA AlzheimerÕs
situationsdisease.
are notThe only downside
limited to Serbia.to mistreatment of children with autism
looked upofthethe
member AMBER
parentAlert and wrote Autism the
association, system?
Laurie No children
Ahern related allowed.
to me that while isof wandering.
found in many countries where the
down theoflawmakers
Society most involved
Serbia, reported that with its
a large It prompted
she me to callshe
was in Uruguay, onefound
of the names
children sheer number of children with autism is
enactment. are children with autism Ð a
percentage oninmy list Ðbecause,
cages Senator Dianne Feinstein,to
ÒÉ according a staff, overwhelming the systems and limited
IÕd vulnerable
very been down this roadfor
group before. Calling
abuse.Ó California
they hadDemocrat
autism.Ówho had helped our resources. Furthermore, in many countries,
Reprinted with
Reprinted with permission
permissionfrom
fromThe
TheAutism
AutismFile.
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2008.Info@autismÞle.com.
Info@autismÞle.com. THE THE
AUTISM FILE FILE
AUTISM AUTUMN 51
2008 2008
AUTUMN 37
 ADVOCACY

and pervasiveness of the discrimination

they suffer in the access to proper and
timely health care and services, we must
recognize that autism is becoming the most
important human rights health issue in the
world. Indeed, undisputed facts and greater
moral maturity compels the world to see in
the predicament of individuals with autism
and other mental disabilities the new human
rights frontier of our time.Ó
How are individuals with autism
discriminated against in the United States?
I talked to Lee Grossman and to Robert
Krakow, Chairman of the Board of Lifespire
and co-founder of Autism United.
Lee reported, ÒI donÕt know of any place
in the world where people with autism and
their families arenÕt being discriminated
against. We know that there are some
human atrocities happening. We know
Photo used with permission of MDRI that some people with autism are being
institutionalized É put in cages É But
such as China and Japan, autism carries a THE AUTISM SOCIETY OF AMERICA at the same time, you have the developed
terrible social stigma. This results in the HAS ISSUED THE FOLLOWING countries, such as the US, where such a
family being shunned by the community STATEMENT ON AUTISM AS A small minority of people who have autism
and the child not receiving basic human HUMAN RIGHTS VIOLATION: are getting looked at appropriately by
rights. In Thailand up until recently this ÒThe health care indispensable to a full physicians, for example. So we have yet to
resulted in many children in rural areas and meaningful life is a fundamental right of identify anyplace in the world where people,
being locked in cages with Ôsuperstitious all human beings. just because of their diagnosis, arenÕt being
treatments.Õ Thanks to the dedicated work In every legal culture of the world, in the discriminated against.Ó
of Princess Ubolratana, whose son Khun several codiÞcations of the international I asked Lee how the ÒhandlingÓ of
Poom Jensen had autism and recently died communityÕs recognition and commitment autism differs from other conditions. Lee
in the tsunami, many of these children to fundamental human rights, and in the cited the example of HIV, ÒÉ where there
with autism in the rural villages have been bills of rights of virtually every country are worldwide efforts and public policy
moved to excellent treatment facilities. essential health care has been recognized as initiatives in many, many countries in the
The Princess has demonstrated that these a fundamental human right. world to deal with conditions such as HIV,
LoriÕs children:
terrible Connor
conditions andbeCharlotte
can corrected and But with autism, there is a pervasive and, for the most part, the media and
children with autism can be treated with discrimination on an equally global scale. communities have dealt aggressively and
effective therapies
of him atandmy with
desk compassion.Ó Proper and timely access to medical
news photo as a reminder. legislators. Asking their receptionist for Drownings typically
positively in providing treatment and a
Being a child advocate andgood
Dave continued, ÒMy part friend
of the diagnosis
the and treatment
right staffer. are typically
Getting voicemail and a not more wholesome environment for people
EllsworthAutism
National Culver,Association,
co-founderitÕsofchildren
Mercy like available
callback born and
outwhere they are,more
of obligation theythan
are happen
affected by HIVafter
or AIDS.a You
child
canÕt say
Corps (the largest international
this that instill the desire to not give up. emergency discouraged
compassion. Allorreasons
simplyto withheld. Services,
procrastinate. the same thing for autism. There are no
relief agency), went with me to Asia and virtually
Then a fewnon-existent, are typically
days later I noticed a different with public
national autism policieshas
that deal speciÞcally
Ainvestigated
NEW ALERT theSYSTEM
devastating effect of
IS CREATED, inadequate
alert on my TVand inappropriate
screen. A Silver Alert.when with autism. There are no communities
autism. He got very
BUT NO CHILDREN ALLOWED involved with the available.
Although IÕdRegardless
never heardofofethnicity, economic
it, I understood wandered.
or cultures that seem Inasthe
if theypast
are really
unbelievable neglect he saw.
It was early May when I was reminded He told of status,
what nationality,
it meant. A missing religion
senior,or likely
country,
with responding to this epidemic. WeÕve done
me with
the AMBER great sorrow
Alert. One that if he issued
had been were not AlzheimerÕs.
individuals with Autism and their loved ones four
the sameyears
thing foralone, at and
cancer, diabetes
working
in our area
evening
forÐ Mercy
his life tonewscast.
autism. IHe
Corps
the details
mustÕve
he would
crawled over devote
let out
said that
our
theachildren
sigh
Thesystematically
are
myleft
state
Silver Alert became effectiveagainst
discriminated
to fend for themselves to providea the
of North Carolina in 2007.
in
ItÕs
and least
other 14 medical
chronic children with
conditions,
has yet to be done for autism. And not
but this

since
were Christian, my husband,
raised in silent terror and asked what was
ignored by system that notiÞes
most meager the public
of supports andabout missing
interventions. autism
only has it yetunder
to be done age 12 but
for autism,
wrong.
those whoI explained
should what happened
be helping. Heto Benjy,
said this endangered adults who suffer
The numbers of those diagnosed with from dementia there is a conversely proportional amount
and
causedhowhiman AMBER
more pain Alert couldÕve
than made
disaster victims orautism
other cognitive impairments,
are incredibly such asof
high, already have
of died
negativity givenas a result
towards the autism
awho
difference. He walked
do get help. He diedto the
lastcomputer,
year at 78 AlzheimerÕs
pandemic proportions, and continue to
disease. The only downside to community. Again, theyÕre systematically
looked
with mostup the AMBER
of his workAlert and wrote
undone.Ó the
risesystem?
unabated.No children allowed. by the
When confronted of wandering.
being discriminated against: TheyÕre not
down the lawmakers most involved with its It promptedand
seriousness me to call one of the
consequences of names
the provided adequate healthcare, not provided
enactment. oncondition,
my list Ð Senator Dianne Feinstein,
by the numbers of affected a appropriate or adequate services in terms
IÕd been down this road before. Calling California Democrat who had helped
individuals and families, and by the scale our of education or behavioral services, and
38 Reprinted with
AUTUMN 2008 permission
THE AUTISM FILEfrom The Autism File. Autumn 2008. Info@autismÞle.com.
Reprinted with permission from The Autism File. Autumn
THE2008. Info@autismÞle.com.
AUTISM FILE AUTUMN 2008 51
families are left to fend for themselves in
trying to get the meager services that are “All people are valuable, deserving of respect,
out there. I would say that not only is this
happening in Third World nations, but in the and can participate in society and a family with
most developed nations, such as our own.Ó
According to Robert Krakow, ÒIn this appropriate supports.”
country, weÕve come a long way. For
education, we have the Individuals with Elizabeth Bauer, former Executive Director of the Michigan Protection and
Disabilities Education Act. What we see Advocacy Service, elected member of the Michigan State Board of Education,
now with a lot of families and children is the and Board member of Mental Disability Rights International
way that thatÕs not implemented due to lack
of resources, so the public schools take a as a society we should make it available. centers, and work centers that are a result
position adverse to families and sometimes ThatÕs a civil rights issue Ð the right of a of that. And you donÕt have the widespread
resort to bullying tactics or retaliation. child to have access to healthcare to recover. abuse that we used to have. ThereÕs still
ThatÕs discrimination. But we have a A child should have the same access as any abuse, and there are still violations, and
mechanism here to assert our civil rights for other to be healthy. Very few kids get the there are still bad settings and bad actors,
our children in education. What it comes kind of intervention that would give them but it did have an institutional and societal
down to, then, is resources, because who the opportunity to lead a productive life. response that was historic, and it happened
has access to a lawyer who can manipulate Providing appropriate medical care Ð not in other places, too. So those battles still
that system for the family better than they just drugs Ð the opportunity to get the most have to be fought, because now weÕre going
could do it themselves? Because we know appropriate medical interventions to lead to have many, many more adults that need a
the schools, in many cases, are doing that. the most productive life Ð is a civil right, setting in which they can live, and some of
So then, itÕs access to justice in that system. and thatÕs being violated every day and our them will need 1-to-1 assistance. Is that a
So I see it as a continuum. I wouldnÕt make society is just not coming to grips with it. civil right? I would argue: ÒYes.Ó Is it a civil
any kind of artiÞcial distinction. People ItÕs been maybe 15 years since weÕve seen right that our country is going to be willing
with disabilities are subject to being denied an upsurge in the diagnosis of autism, and to pay for? ThatÕs in very serious doubt Ð
access to society. In some places itÕs I think itÕs a real increase in numbers, and we have cut-backs going on in Medicaid
worse than others. In some places kids are the United States is just not dealing with right now, and thatÕs how itÕs funded. So
tethered to cages; in some places theyÕre it Ð itÕs just not responding adequately. ItÕs we have to Þnd new ways to respond to that
hidden in the back of the apartment. IÕm a monumental problem Ð itÕs a civil rights and fulÞl the obligations we have so that
sure there are many children with autism problem, and itÕs also a social problem that each individual can fulÞl their potential and
who are hidden in poorer communities in we have to respond to. When these kids lead a productive and safe life where theyÕre
New York City Ð IÕve seen this. They donÕt become adults, there arenÕt enough group not abused and they have an opportunity to
go to school. Schools donÕt even know residences or other types of interventions. thrive.Ó
they exist. TheyÕre denied basic civil rights: When these kids get in institutional settings Lee added, ÒIndividuals with autism,
the right to participate in their society and as adults, the opportunities for abuse are when they receive the appropriate
LoriÕs
get children: Then
services. ConnorthereÕs
and Charlotte
the denial of just horrendous, and this is where the civil interventions, improve signiÞcantly. To
insurance coverage. ItÕs all a matter of a rights aspect of this comes into the best me, thatÕs the whole idea behind the
gradation
news photoofofdeprivation.
to aspire
him at my desk
to anadvocate
ideal where
We as
every
allawould try
reminder. focus, because
legislators. Askingintheir
Newreceptionist
York -- andforother
Drownings typically
global human rights violation: If theyÕre
Being a child and part ofperson
the places,
the right too -- but
staffer. in New
Getting York, there
voicemail and awas not getting any services, you canÕt expect
with a disability
National is integrateditÕs
Autism Association, fully into the
children like a placeborn
callback called
outWillowbrook
of obligationwheremore abuse
than happen
them after
to improve. a child
The hope is that we can
society
this thatand whatever
instill the desire accommodations
to not give up. are was rampant.
compassion. They lived
All reasons in Þlth, had no
to procrastinate. maximize their potential and provide them
necessary are made. In a poorer society, education,
Then a few dayswerelater
abused physically
I noticed and every
a different with
with autismso has
opportunities that they can live a
that
A NEW mayALERTbe more difÞcult,ISalthough
SYSTEM CREATED, that other
alert onway.
my TVAnd Þnally
screen. people
A Silver Ð parents
Alert. much more productive life. ThatÕs what
depends
BUT NO on the culture.
CHILDREN You could have a
ALLOWED Although
mostly ÐIÕdresponded
never heard to of it, I The
that. understood
result wandered.
weÕre In the
robbing of people past
right now who
culture withMay
It was early evenwhenscarce resources
I was reminded that
of still what it meant.
of that, and aAlong
missing senior,Ð likely
struggle a famouswith have autism, and weÕre robbing it from the
the AMBER
respects Alert. One
individuals who hadarebeen issued than
less-able AlzheimerÕs.
struggle - was the closing of Willowbrook
four years alone, at
families, too, because their families have to
in our individuals.Ó
other
evening
area Ð the details crawled over our
newscast. ÒIn
Bob continued, I mustÕve let outÞeld,
the health a sigh my
TheaSilver
and
state
courtAlert
of
orderbecame
North
in Neweffective
Carolina
York that
in 2007.
in
ItÕs a State,
least
go 14 they
into debt, children with be
have to sometimes
shunned from society; the burden is placed
appropriate settings be funded by the
since Christian, my husband,
thereÕs no question: non-pharmaceutical asked what was system that notiÞes the public
and that was an example where the legalabout missing autism
on the familyunder
because ofage 12theyÕve
the crisis
wrong. I explained what happened
biomedical intervention is very scarce Ð rare. to Benjy, endangered
system wasadults who suffer
the effective from dementia
mechanism to been thrown into Ð of not receiving any
and how
Very few an AMBER
families canAlert couldÕve
really made in
participate orgetting
other cognitive impairments,
that done. And thereÕs such as order
a court have died
assistance askidsabeing
and their resultdiscriminated
a difference. He walked to the
that because insurance does not cover most computer, AlzheimerÕs disease.
thatÕs in place todayTheÐ only downside
for the last 25-30 to against because they have autism. WeÕre
looked
of it, soup itÕsthe AMBER Alert and
out-of-pocket. Whywroteshould that the system? No children allowed.
years Ð that requires the State to provide for of wandering.
robbing the families and the individuals of
not be available to certain kids if itwith
down the lawmakers most involved canits
help It prompted
children in anme to call one way.
appropriate of theAndnames weÕve opportunities and the chance to maximize
enactment.
them? ThatÕs a social decision weÕll have to ongotmymany
list Ð more
Senator Dianne Feinstein,
group homes and other a the individualÕs potential.Ó
IÕd been
make, becausedownifthis road
it can before.
truly helpCalling
them, then California
kinds of Democrat whoday
settings, and had centers,
helped our rehab
Reprinted with
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AUTISM FILE FILE
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2008 2008
AUTUMN 39