"Autism Speaks" receives a large amount of name brand recognition, as the brand name continues to be highlighted in some blogs and face book communities in attempts to demonize the organization. It creates additional opportunities for people to assess the organization for what it is presently doing.
It is almost time for "World Autism Awareness Month", along with the "Light it Blue" campaign, sponsored by Autism Speaks, that is a source of discomfort voiced by some in online Autism communities.
This global effort is a potential source of trickle-down charitable support to the thousands of non-profit organizations, locally, nationally, and globally that work independently and/or together to provide awareness, education and support for people on the spectrum.
Other than the continued vaccine controversies that present a negative element on the Autism Speak's face book page, the over one million likes is reflective of the positive atmosphere that is presented there.
There are photos of smiling children and young adults on the spectrum that continue to be highlighted there, and in the PSA’s the organization creates. However, it is not possible for any charitable organization to raise money for a mission, if there is not cause to generate the emotion of compassion in human beings. That’s not even marketing 101 it is humanity 101.
Autism Speaks is run like a well oiled corporate machine that is no surprise as it was founded by a corporate executive that was successful in running a media giant for two decades. But no organization is error free; without assessing feedback and responding appropriately, no organization can survive in a free market economy.
The two videos some found offensive, "Autism Everyday" and "I Am Autism" are history. They no longer exist anywhere but in some online autism communities where the memory is kept fresh, often sparking the emotion of empathy anger, that can be a reliable source of comments.
As illustrated by Christopher Gillberg in the video link below, who designed the Gillberg Criteria for Asperger's that will continue to be used in some areas of the World after the DSM5 goes into effect, there are many underlying associated conditions that result in what is currently defined by several sources of criteria in the assessment of Autism spectrum disorders.
http://www.youtube.com/watch?v=bfSlZqe-iik
A short list includes Fragile X syndrome, Tuberous Sclerosis, Noonan’s Syndrome, 22q11 gene deletion syndrome, Regressive Autism specific to males with abnormal brain growth, Sensory Integration Disorder, ADHD, Pragmatic Language Impairment (PLI), Non-verbal learning disorder (NLD), Hyperlexia, and many more.
About half of those associated conditions can result in clinically significant language development delays including Hyperlexia and PLI.
My flavor of Autism includes Hyperlexia that comprises precocious reading ability, language development delay until age 4, difficulty with verbal speaking most of my life, problems with reading comprehension, and an overall desire to decode every symbol I came across. Numbers, words, and letters were some of my best friends. :) In addition, Motor development problems, Sensory Integration issues-Tactile sensitivity and ADHD rounded out a general description of my flavor of Autism.
Under DSMIV and ICD10 guidelines my flavor of Autism, if assessed under the age of 4, is most often diagnosed as Autistic Disorder or PDD NOS, but under Gillberg Criteria that allows for a Hyperlexic or Pragmatic language impairment language development delay, it fits a diagnosis of what Gillberg and Hans Asperger described, initially, as “Autistic Psychopathy", ticking almost every trait of that Autistic syndrome described.
From my experience in online Autism communities, the flavor most often described is one with strong symptoms of Non-verbal learning disorder, NLD, where there may be early speaking abilities, but often substantial issues with math and visual spatial skills.
That is no surprise as the majority of individuals diagnosed with Asperger’s syndrome meet the symptoms for NLD, in the US, where DSMIV guidelines have been used.
Autism Speaks clearly acknowledges in its “What it means to be on the Spectrum” section on their main website linked here: http://www.autismspeaks.org/what-autism that there are some individuals that experience different challenges than others on the spectrum.
Symptoms of the three communication disorders, listed above, are often what is described in online autism communities, but rarely Fragile X syndrome, Noonan’s Syndrome, 22q11 gene deletion syndrome, Tuberous Sclerosis, the type of Regressive Autism associated with abnormal brain growth, and other challenging associated conditions.
Autism Speaks acknowledges that the support needed by some is one of accommodation, acceptance, and opportunity to work with their strength in abilities. But the needs served by research are much different for others.
While accommodation and opportunity to work in areas of strength of ability can be legislated and enforced by disability regulations and laws, limited now per ADA laws that exist, acceptance can neither be legislated nor enforced by law.
Acceptance is an ethical decision that can be enhanced by the lessons of home-life and culture. Acceptance in our culture, promoted almost everywhere in every avenue of information is the attainment of perfection both in vanity of appearance and material success.
The only effective way for most people to experience acceptance in this culture is to accept one’s self and attempt to understand this dichotomy of culture. Autism Speak’s PSAs, websites and volunteer walks can be avoided if taken offense to, but the over-driving source of non-acceptance is an unrealistic expectation of culture driven by media sources everywhere, in almost every avenue in life.
It seems sad to me that in some online Autism communities a kind word about a charitable organization like Autism Speaks or the need for research for a cure of remediation of the difficult symptoms of a subgroup of Autism like Fragile X syndrome can mean an automatic boot out of the online Autism community.
Some therapies, research, and support are appropriate for some sub-groups on the spectrum and not appropriate for others. While acceptance is hard for anyone to find in larger society, it would help to at least attempt to understand these differences in characteristics, needs, and supports of people on the spectrum to at least potentially better provide a level of what can be controlled in acceptance among people that do have compassion for each other in online Autism communities.
That is what one sees on Autism Speaks face book page, but there are people there that get paid to make it happen. The hundreds of blogs, facebook pages, and large online Autism communities are comprised almost entirely of volunteer effort, where only personal ethics determines the social rules of acceptance in each avenue of communication, and who may find a place to belong and who may not.
As in all cases of volunteer acceptance there is no law that enforces that other than personal ethics, attempts at understanding other perspectives, and respect for them when possible. :)
Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:
http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html
I think if one is going to use an "Us vs Them" ideology, the first thing one might consider determining is "Who Us Is":
ASD is described as a lifelong disorder of reciprocal social
communication that is diagnosed through social communication impairments
mandatory required in developing and maintaining peer appropriate
relationships, social-emotional reciprocity, and non-verbal language
impairments that must be observed during the course of diagnosis and
RRBI behavioral impairments that may be met by client history alone, per
the newest DSM5 guidelines, as described recently by Sue Swedo, Chair of the DSM5 committee, from the
APA website linked below.
http://www.psychiatry.org/practice/dsm/dsm5/dsm-5-video-series-changes-to-autism-spectrum-disorder
The identified factors that potentially underlie and co-exist as what is
described as ASD currently are far ranging and far reaching beyond the
over 4,000 now identified associated genetic markers.
Learning disorders/conditions in communication associated with ASD mimic
many of the autistic like traits as standalone disorders including Pragmatic Language Impairment, Nonverbal Learning Disorder. Hyperlexia,
along with other associated conditions like ADHD, Auditory Processing
Disorder, Sensory Processing Disorder, OCD and the more controversial
category of behavioral addiction.
That's nine conditions many of which are often co-morbid assessed in the same individual with or without a diagnosis of ASD.
Then there are the identified genetic conditions associated including
Tuberous sclerosis, fragile X syndrome, a potential genetic issue with
abnormal brain growth specific to males with regressive autism, Noonan’s
syndrome, 22Q11 deletion syndrome, and potentially even
characteristics of androgyny.
A recent "Discover" article identified an abnormality in the left
hemisphere of Temple Grandin's Brain that likely resulted in some of
her savant like skills in right hemisphere brain function.
Conversely, Non-verbal learning disorder, symptoms of which have been
studied in the majority of individuals diagnosed with Asperger's
syndrome, often is associated with lesions in the right hemisphere of
the brain, which can potentially be compensated by enhanced adaptation
specific to the left hemisphere of the brain.
This is part of the general identified process of neuroplasticity in
human adaptation to inherent and environmental challenges. This can
potentially result in a visual or verbal navigation of the world that in
terms of human experience is a different universe of being. Yet still
identified by a list of observed behavioral impairments, described,
defined, and labeled as ASD(s).
Then there are the potential health factors of immune system dysfunction, GI problems, mitochondrial dysfunction and others.
That's just a small list of identified potential underlying factors,
many of which may work in a synergistic fashion in what results
described as a spectrum disorder.
Every person that comes online identifying on the spectrum has their own
flavor of autism and their own point of view on how the big picture
issues should be addressed, but in autism there is no big picture other
than the diagnostic classification. Nature doesn't play by DSMIV or 5
rules or abstract concepts of rules described in words like
"neurotypical"
Back to the subject of ASD, the Autism Quotient (AQ) test designed
by Simon-Baron Cohen is successful in correctly identifying ASD in 80%
of individuals previously diagnosed.
However, the Autism Quotient test identifies a scale of autistic traits
in the general population similar to what people score on the AQ test who are actually
diagnosed with an ASD, in 10 to 15% of the population, in what Cohen
describes as a "Broader Autism Phenotype".
An Autism range score on the AQ test correctly screens 10% or less of
people in the general population in risk of actual diagnostic condition,
so the AQ tool as a diagnostic tool is not an effective one.
The Aspie Quiz is no more accurate, as identified by the author of that
Quiz, at predicting an actual diagnosis of autism in the general
population, and he also identifies the Aspie Quiz as a tool to screen
Aspie traits, but not as an effective diagnostic tool.
Moving out further than the 10 to 15% in the general population
identified on a broader autism phenotype are studies in Sweden and the
US that have identified about 30% of the general population meeting at
least one criterion element of an ASD diagnosis.
The author of the Aspie Quiz identifies about 10 to 15% in the general
population, from his own statistical analysis, has having a strong
component of aspie traits that is his reported equivalent term for
"neurodiverse" traits.
Currently there is somewhere close to a .6% border in the general
population, in the US, of people who are officially diagnosed with an
ASD, per CDC estimates.
According to CDC epidemiological studies there is close to 1.14% of 8
year old children and close to 90% of those children identified as receiving educational
support in Individualized Education Plans. Out of that identified
1.14%, 44% are assessed with autistic Disorder, 47% with
PDDNOS, and 9% with Asperger's Sydrome.
Approximately 20% of the individuals identified diagnosed with
Asperger's syndrome in the CDC assessment are identified as females
comprising about 2% of the total assessed ASD demographic, with males
diagnosed with Asperger's syndrome comprising about 7% of the total
assessed ASD demographic.
There is no clear border of "Who Is Us" or "Who Is Them", as that relates to ASD or Autistic like traits. The information provided here, all of which can be sourced upon request, is clear evidence of that.
There is the potential that close to 1 out of every 3 people one meets
on the street meets at least one criterion element associated with ASD.
There is also the potential that 1 to 2 out of every 10 people one meets
on the street scores in similar ASD territory on the Aspie Quiz and/or
AQ test, similar to people reporting scores who have
either taken the quiz and/or test during a period of their life that led
to an official diagnosis, after an official diagnosis, or assessed
their place on the spectrum per self-diagnosis, in part, as a result of
AQ scores of 32 out of 50 and/or Aspie Quiz scores of 125 out of 200,
that respectively put an individual in ASD trait territory or Aspie
trait territory. However, these are also scores that are potentially shared
by 10 to 15% of the general population, in what is described as a
broader autism phenotype.
Any person out of the 30% of the population identified as meeting at
least one ASD criterion element could describe themselves, at least in
part, with the adjective of "autistic" to describe their autistic like
traits.
Parsing the autistic or non-autistic traits out of the general
population by general observation alone is virtually impossible when
one looks at the scale of what it means to have autistic-like traits in
the much larger general population, where 2 million might be officially
diagnosed, 30 to 45 million might be on a broader autism phenotype, and
up to 100 Million might meet at least one criterion element of an ASD
diagnosis.
The current statistics are based on DSMIV criteria that has
up to 2027 possible diagnostic criterion element combinations to
technically meet the requirements for just the 1 disorder of Autistic
Disorder out of the 5 current disorders that constitute the ASD
spectrum, where two people technically can have completely different
criterion element impairments diagnosed with the same label of Autistic
Disorder.
Under the DSM5 criteria for ASD there are 11 possible diagnostic element
combinations to technically meet the requirements for an ASD diagnosis. However, with the new guidelines per summary by Sue Swedo, chair of the
DSM5 committee, in the attached link provided earlier in this post, for
those people that meet the required RRBI criterion elements by client
history alone, there is effectively 1 diagnostic element combination to
be met in an actual observation of behavioral impairments to meet
requirements for an official diagnosis as all three of the observed
criterion elements of impairments in Social-Communication are mandatory.
Those three mandatory criterion elements are described very broadly per
each criterion element so there is still almost an unlimited number of
nuanced impairments that might or might not lead to a subjective
analysis of diagnosis by the diagnosing professionals. But this was
still the case to a lesser degree in the 2027 diagnostic combinations,
just for Autistic Disorder, among all of the DSMIV criterion elements
that were also broadly described for the 12 individually described
criterion elements for Autistic Disorder.
It is virtually impossible, at this
point in time, to generally observe by behavior alone, "Who Them Is Now", because of the complexity of what autistic traits are described as
and the demographics of those criterion elements, at least one met, in
up to 30% in the general population (100 million people).
It is also virtually impossible, at this
point in time, to generally determine by observing behavior alone "Who Us Will Be", just specific to the .6% of the general population,
currently estimated as officially diagnosed, who may or may not be
diagnosed with an actual official diagnosis of ASD, in the future, under
these new much more restrictive number of criterion elements mandatory
required for a diagnosis under the DSM5 ASD criteria.
Any label that describes "A Them",
without a clear method of determining "Who Them Is", is interesting
rhetoric but effectively useless in terms of semantics as it applies to
the human condition.
Ironically, this is exactly the reason there is a new much more restrictive ASD definition now in the DSM5 criteria for ASD.
The research that Catherine Lord, a member of the DSM5 working
committee, recently led, has been used in the public media to justify
the effectiveness of the new DSM5 criteria in eliminating potential
misdiagnosis in the general population.
The study led by Lord, used a designed DSMIV diagnostic tool as opposed
to a designed DSM5 diagnostic tool to assess records of individuals in a
general population clinical sample and found that the DSMIV diagnostic
tool incorrectly identified 90% of the general population sample that
was not diagnosed with an ASD.
So in effect, the DSMIV tool per the spectrum disorder of PDDNOS was
recognized as no more effective than the Aspie quiz or AQ test to
diagnose a person with an ASD.
The American Psychological Association has come to the effective
conclusion by way of Lord's research that not even the APA had any clear
idea of "Who Us Is", as that relates to a diagnosed ASD, since at least
1994, when the DSMIV went into effect.
The Gillberg criteria for Asperger's syndrome was and still is, overall,
a much more effective diagnostic tool to avoid misdiagnosis in the
general population as opposed to the loosely described and defined DSMIV
criteria, overall, for all ASD's, including PDDNOS which is assessed
as the proportion of overall diagnoses in some statistical surveys as high as
close to 70%, per DSMIV and ICD10 standards for diagnosis.
That to me is the most ironic part, that the Asperger's syndrome
criteria developed by Christopher Gillberg, as more directly in
reference to what Hans Asperger identified as "Autistic Psychopathy" in
his case studies, has been the most effective way, overall, of insuring
an actual neurodevelopmental disorder was diagnosed, to avoid the
potential for misdiagnosis.
Much of what "Us Is", is still in murky
waters, per what ASD is or is not. And of course, the same applies to
"Them", whoever "Them Is".
Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:
http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html
Hyperlexia is one of three communication learning disorders strongly associated with the spectrum. I followed the Hyperlexic pattern of reading before speaking at age 4. Fascination
with letters and numbers, and extremely fast ability to read, without
being able to put into words in very many sentences what I just read,
verbally. The same is true for me when I watch a movie or TV show. Or
in explaining what I did yesterday in spoken language.
It's
interesting because one can be diagnosed under the Gillberg criteria for
Asperger's with a language delay, so there are likely many individuals
with Hyperlexic type learning patterns, that fit under that criteria
that would not fit under it with current DSMIV or ICD10 diagnostic
criteria.
Language delays are also common in Pragmatic language Impairment PLI, so there is likely some with those symptoms of PLI that
might not be diagnosed with Asperger's if they met the other criteria
because of language development delay exclusion. Pragmatic Language Impairment per Wiki definition reads very much like an ASD, as a stand
alone disorder. The new Social Communication Disorder in the DSM5
describes a Pragmatic Language Impairment as the core issue of
difficulty in social communication.
The most commonly
associated communication learning disorder is Nonverbal Learning
Disorder, NLD. Research indicates that a majority of individuals
diagnosed with Asperger's syndrome meet the symptoms for NLD.
Individuals with NLD often have difficulties with Math and visual spatial tasks, and commonly score substantially higher in verbal IQ than
performance IQ in standard intelligence testing. Brain lesions in the
right hemisphere of the brain are also associated.
Conversely,
Temple Grandin has a type of neurodevelopmental problem in the left
hemisphere of her brain, recently highlighted in Discover magazine, that
the right hemisphere of her brain adapted to through her amazing visual
spatial skills. Just another one of an almost unlimited number of
potential underlying factors that result in meeting observed behavioral
impairments to gain a diagnosis of some form of ASD.
Some of
these underlying factors likely play a role in whether one navigates
their life more through visual images and patterns instead of verbal
thought. Some individuals with Nonverbal Learning Disorder are
described as navigating the world more through verbal language than the
visual spatial skills they often have difficulty with.
Because
of the Hyperlexia and Pragmatic Language Impairment exclusions in
language development delays, there are likely many individuals diagnosed
with Autistic Disorder, sub-typed as HFA, or PDDNOS that would
otherwise be diagnosed with Asperger's syndrome under the Gillberg
Criteria because it allows for language development delays.
And
none of these communication disorders seem to fully account for the
difficulties in verbal spoken language in Regressive Autism, where the
small children lose words after gaining them. Abnormal brain growth is
found specific to male children with this type of Regressive Autism, so
that may provide another clue to a brain difference as a potential
underlying causal factor, for that described sub-group of ASD.
And this is just an area specific to language that does not take into
account other varying factors like ADHD, Sensory Processing Disorder,
Auditory processing disorder and so many other issues that often overlap
and may work together in synergy in some cases resulting in the
required observed behavioral impairments for a diagnosis of ASD.
The association of Hyperlexia and the Autism Spectrum is discussed in further detail among people on the spectrum in the link below from the Wrong Planet website.
http://www.wrongplanet.net/postt225772.html
Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:
http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html
