"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
"AutisticS Peeks!"
It's Good
to Hear
ya
:)!
*
(:@@
@:)
!*
AS
P:
Autistic Spectrum
Perception
and
Perspective
It's Good
to Hear
ya
:)!
*
(:@@
@:)
!*
AS
P:
Autistic Spectrum
Perception
and
Perspective
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