There is a growing agreement that it is the co-morbid conditions, learning disorders, disease, other conditions and factors that work, in part, as underlying factors associated with "Autistic characteristics" that make what is defined as a diagnosed disorder among humans.
Christopher Gillberg, designer of the Gillberg Criteria for Asperger's syndrome that is more reflective of the "Autistic Psychopathy" that Hans Asperger originally described in his case studies, is scheduled to make a presentation in support of this growing agreement at the International Meeting for Autism Research, IMFAR.
Research shows a broader autism phenotype out into 10 to 15% of the population, and at least one criterion element met out into 30% of the population.
The government funds the majority of Autism research, per 2010 IACC, Inter-Agency Autism Coordinating Committee report, at 335M as opposed to Autism Speaks 4% at 18M and the Simon's Foundation 12% at 53M, with less than 1% funded by all the other private research organizations combined together, in the US.
The combined global effort is likely close to or well over a Billion dollars, but I have not seen any hard numbers for that global effort.
The majority of this research is aimed at co-morbid Genetic factors, Learning disorders, Disease, other Conditions and Factors that may underlie, in part, the autistic symptoms working together as an identified and diagnosed disorder that limits and impairs one in daily life functioning including:
Non-Verbal Learning Disorder; Pragmatic Language; Impairment; Hyperlexia; Fragile X Syndrome; Tuberous Sclerosis; 22Q11 Deletion Syndrome; ADHD; Motor Development Impairments, Sensory Processing Disorder; Noonan's Syndrome; Mitochondrial disease; Epilepsy; Viral and Bacterial Infections; Sex Differentials; the Gut and the Micro biome; Maternal Immune Activation – Influenza Virus most notably as well as historically rubella; Prenatal Hormonal Influence; Microglia; Astrocytes and Cytokines; Major Histocompatibility Complex (MHC); Inflammatory Bowel Disease / Diabetes and Muscular Dystrophy; relationship of Atopic diseases, Allergy and Mast cells; Interrelationship of Intellectual Disability and Schizophrenia, and potential Epigenetic influence.
That is not a comprehensive list, but it is long enough to gain another perspective, that awareness and acceptance is not all there is to the total equation of what is defined as an Autism Spectrum Disorder in Human Animals.
What remains as an Autism Spectrum Disorder, with the more restrictive criterion elements of impairment in reciprocal social communication, in the DSM5 will likely close the parentheses of a spectrum disorder further in from the 10 to 30% of the Autistic traits suggested as existing in the general population.
The problems of that 10 to 15% broader autism phenotype or more in gaining acceptance with the rest of the social animal population, is a challenge that most social animals deal with on a daily basis, since their behavior has been noted, as far as science can look back.
RRBI like behaviors have always been an issue for social animals under chronic social stress.
Difficulties in reciprocal social communication, have always been associated with how nurturing the environment of young social animals are along with inherent characteristics, including factors such as color of fur associated with the dopamine reward system of the brain.
Cats with a genetic factor for red fur, including Calico's and Tabbies, are studied as impacted by this genetic factor, and more aggressive by nature, in part, because of this issue.
If anyone with a science-oriented mind, thinks that humans are immune to what the rest of the social animal kingdom experiences with similar issues, they are living under a cultural illusion of exclusion that is not warranted by science.
Most interestingly, what is observed in the domesticated social animal experience that is often described as unusual behavioral impairments is not that much different than what is seen in human animals.
Autism is a human defined abstract construct for a human specific reciprocal social-communication disorder with RRBI's, but other animals experience similar issues, that are of course non-verbal in nature.
It is part of the gene pool that is evident from birth in most animals among the Sitters comprising about 20% of the animal kingdom vs. the Rovers.
I also vote for Autistic Awareness and Acceptance in Animals, in the month of April, and from now on, expanding part of that effort already named out into this full decade we are in.
Considering that Autism is currently assessed by behavioral observation, the phrase "Autistic-like", is a bit of an oxymoron, I think, often used as a politically correct device of language, where other animals are concerned. :)
There was a very interesting analysis of a study that provided a generational association of maternal abuse in childhood with subsequent generations as a causal factor of Autism Spectrum Disorders.
The take in the article discussed in the link below from the Forbes publication, by author Emily Willingham, assessed the potential that an inflammatory or epigenetic influence might be the trigger.
But I think there is more of a potential "common sense" association as a contributing factor in what makes a broader autism phenotype a diagnosed disorder, within the span of one life, in some cases, per sexual and/or physical abuse and the controversial existence of non-substance behavioral addictions as part of the disease of addiction.
"In addition, because of some of the key behaviors associated with autism, autistic children are more likely–much more likely [PDF]–than non-autistic children to be abused, physically, emotionally, and sexually."
For clarification the study, per the statement quoted below in the last paragraph, was limited to a sample of individuals referred into comprehensive community mental services and not indicative of the general population of people on the spectrum.
Sexual and/or physical abuse, as a single factor of risk, predisposes a higher statistical incidence for the need of comprehensive community mental health services with or without an autism spectrum diagnosis or assessment as such.
There is no indication in the study, quoted below, whether or not associated sexual and physical abuse are part of what actually led to a diagnosis among the individuals in the study.
It is unlikely that physical and sexual abuse causes language impairments, deficits in motor skills, but potentially issues with sensory integration problems as chronic stress can lead to issues such as sensitivity to noise, but none of these neuro-developmental impairments is required for a spectrum diagnosis, per the current loose criteria requirements for Asperger's syndrome and PDDNOS, nor will they be mandatory required for a DSM5 diagnosis.
Ironically, the Gillberg criteria for Asperger's syndrome provides insurance for the continued capture of some type of neurodevelopmental disorder as language impairments and problems in motor development remain as mandatory criteria.
It is a well-known factor that chronic stress can lead to RRBI type behaviors, not only in humans but in other animals, like rats, with the only other requirements currently required for a diagnosis potentially as limited as deficit in ability for back and forth conversation and developing and maintaining peer appropriate friendships. Sexual and physical abuse is among the greatest factors of chronic stress in humans.
In the DSM5 criteria it is identified that symptoms are present in early childhood but may not fully manifest for a diagnosis until social demands exceed social capacity. Physical and sexual abuse certainly rate as a social demand above and beyond what most people deal with in life.
And the symptoms of substance abuse and behavioral addiction per the American Society of Addiction Medicine, ASAM, broad definition of the disease of addiction correlates, to some degree, of what is described in the current loose criteria requirements for PDDNOS or Asperger's syndrome.
And again, certainly a social stressor that could take one off the broader autism phenotype and on to diagnostic territory per social demands exceeding social capacity.
It is currently very difficult, per DSMIV guidelines, to determine what environmental factors, including physical and sexual abuse and even behavioral addiction, are the social demands that takes one off the broader autism phenotype and on to a spectrum diagnosis for a potential diagnosis of Asperger's or PDDNOS later in life.
Particularly, when there are no clear neurodevelopmental factors mandatory required for a diagnosis later in life, even with the new DSM5 diagnostic criteria, other than traits that might put one on a broader autism phenotype earlier in life.
I think it is clear that addiction, either substance or behavioral and physical/sexual abuse, alone, does not cause a neuro-developmental disorder.
But, I also think that beyond any potential inflammatory or epigenetic impact, such as what has been described in a recent study of schizophrenia among teenagers who are bullied pulling the switch of epigenetics associated with a maternal infection, there is clearly the potential that the factors of physical/sexual abuse and/or behavioral addiction could be significant factors of social demand that takes one off the broader autism phenotype and on to a diagnosis on the spectrum.
In addition, as far as the prenatal environment per hormonal influences, there is some evidence that sexual, physical or verbal abuse could be factors rising to the level of stress that might alter the hormonal prenatal environment, leading to problems in neurodevelopment.
It is impossible to prevent a broader autism phenotype, even in what is observed as similar traits in the animal kingdom, nor does it appear that would be beneficial, but it is possible to control environmental factors like this that could make the difference between a broader autism phenotype or diagnosed disorder.
I see quite a few people making fun of this study, in various online avenues, but associated research may lead to the real road of determining the increase in actual diagnoses, beyond loose criteria and greater awareness leading to a diagnosis, per recent changes in environmental factors of culture.
There is no evidence that sexual or physical abuse has increased in the last two decades and some evidence that is has decreased, but there is evidence that behavioral addictions are on the rise.
The DSM5working groups have not been able to fully wrap their minds around a growing cultural phenomenon yet, to provide appropriate diagnostic criteria to assess and more fully measure the impact of behavioral addiction.
Some of the ASAM symptoms of behavioral addiction can potentially be defined as an RRBI in clinical practice. And also potentially associated with other problems of social communication to this point, but it does become a lower variable of potential contribution of effect with the more restrictive criteria of the DSM5, and as always less of a potential contributing factor with the Gillberg Criteria that makes a mandatory requirement of criteria for motor development and language impairments.
"Finally, the children in this study sample were referred into comprehensive community mental health services. To our knowledge, no published information is available on how their characteristics may differ from the general population of children with autistic spectrum disorders."
Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:
"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.
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:
