Stop Bashing Autism Speaks!

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http://en.wikipedia.org/wiki/Medical_model_of_disability



The communication handicaps that some children with autism have, definitely fit within this medical model of disability. The communication handicaps are considered part of a neurological disorder. That part is definitely not psychobabble, and is well beyond the personality difference of being a little shy.

ABA and Teacch therapy for autism both fit within the medical model of disability. They are both therapies that manage handicaps/disabilities to expand functionality and/or improve functioning in individuals with Autism.

The methods focus on different areas of functionality, and use different methodology, but both methods do exist to improve functionality in individuals with Autism with communication handicaps.

The Teacch acronym is definitely a treatment for autism that acknowledges that some children with autism have communication handicaps. The acronym stands for Treatment and Education of autistic and related communication handicapped Children Approach. The normality sought as a result of that treatment is defined differently in ABA and TEACCH; TEACCH more accepting of the differences among children with autism.

While the TEACCH method is used more in the UK, the demand for ABA is also high in demand, in the UK, limited by the numbers of individuals in that country properly licensed and trained to provide ABA therapy.

The research that Autism Speaks has supported, in assisting in the screening of the disorder at earlier ages, is in alignment with the medical model of these therapies, both used for intervention, to improve functionality in communication handicapped children with Autism.

Some children with Autism communicate quite well; these therapies/treatments are not called for, toward all children with autism, but it doesn't diminish the reality that there are some children with Autism that can barely communicate at all, and are considered to have serious communication handicaps per clinical definition, in the medical field.

There is more focus on the social disability model of Autism in the UK, and a deficit in the US, in this respect, however there is also a focus on the medical model of Autism as well, in the UK, through the availability of these therapies/treatments for communication handicaps among some children with autism.

ABA reflects the actual science of behavioral science and does not rely on instant gratification, instead it is an extremely time consuming process, at times, for the smallest of changes in behaviors.

An instant fix, is the instant gratification that the American public would like to see, however all they have of significant effectiveness, is ABA proven in independent reviews as effective in some cases; TEACHH, along with other therapies and treatments, shown to have some positive results, that do not meet the standards of proof of effectiveness, per independent review.

The American public would also like to see an instant cure for all other disabilities, disorders, and diseases, but all they can truly expect, in this regard, for many of these three D's, is expensive research, and slow progress towards managing and improving the functionality for those individuals to live the best life possible, through treatments and therapy, just as with ABA and TEACCH.

All treatments and therapies, of concern, subject to independent review and analysis of what is proven effective, that can be found on the same website that reviewed the treatments/therapies of ABA, TEACCH, etc. for Autism.

It's interesting too, I think, on how culture makes a difference in this respect. That organization receives relatively little support in the UK, somewhere around 1.8 million in annual fundraising and the CEO of Autistica makes arond 100K in equivalent US dollars, per the last annual report I saw from that organization.

The local autism organization in my area, that provides direct support to individuals with autism, serves one city and raises twice that much in revenue.

The medical industry, overall, is a hugely profitable one in the US, whereas in the UK it exists for the most part to serve it's citizens.

If anything of significance beyond behavioral inteventions is found to treat severe communication handicaps associated with Autism, it is likely to be found in the US, because of that focus, however meanwhile the UK focuses on what is proven to work now.

There is alot to be said for living within one's means; that's not a popular philosphy in the US.

Meanwhile, the "Autism Research Institute" in the US, that was not absorbed by Autism speaks focuses more of their attention on methods of treating autism that are outside of the mainstream, scientifically supported research, associated with autism, that Autism Speaks supports and funds.

That organization get's a 1 out 4 star rating by charity review, and has absorbed the once separate organization "Defeat Autism Now" DAN.

The only reason I know that organization exists, is because of the criticism that autism speaks provides information on DAN related treatment in their third party resource information section.

It's interesting that little to no attention is directed toward the organization, that actually supports the DAN method of treating autism. That might be a good thing, considering that organization won't get any free advertisement here, off of potential focus on it, negative or positive.

The one thing in the US, that might significantly change this picture, is if Universal Health Care was provided here, changing the medical industry into a sevice industry rather than a for-profit industry; the Medical research industry might not be funded nearly as well in the US, if that were the case. And, autism speaks research effort might not receive the same level of support either

The chances of that happening here, in the US, and the attitude of some against it, again, is reflective of corporal punishment, and gun control.

It's reminds me of what Charleston Heston had to say about the protection of his gun rights, words to the effect of "I'll give you my gun when you take it from my cold dead hands". Just replace "free healthcare" with "my gun" in that phrase.

Who benefits is the question, and Autism Speaks, their staff and selected research group, get it all.

DAN, our network of medical quacks will take your money.

My interest is in studies that have not been done, comparing results of various treatments, with a control group who got nothing but more time to develop in early childhood.

In all prior generations this was the norm, and it seems to have worked.

It was seen as a Developmental Delay, and the view from years was they will develop in time. That combined with known adult outcomes, a bent for technological work in isolation, they were seen to benefit the whole to a very useful degree.

Untreated young, we got em! and Adult Outcomes, We got em ! Is a much richer field than, some children were helped.

There seems to be avoidence of the actual range of Autism, and normal outcomes. The truth would hurt Marketing.

Autism Speaks did take their bite of the Vaccine apple, but Government Liability shut that down. Food products had the same result, where it has been proven that food additives are good for all people. Health Care and Insurance can only be Profit Centers if people spend more of their income for services they never use.

Who has seats at the table are the for profit systems, Government, Medical, Charities, Universities, Insurance, and they will figure the best way to play Autism.

There is nothing in this game for the autistic, unless you have healthcare which can be forced to pay for ABA, who will, and look activily for another reason to drop you, raise your rates, or limit services.

The for profit model has surged to the trough just as they did with the Widows and Orphans Fund, That money should be spent to investigate and administrate, not just be given away.

In a School District of thousands, there will be a class room of autistics. All services proven useful should be provided as part of Free Public Education.

No need for a National Panic when the resources are there at a local level.

Behavior Therapy at Teacher Pay Rates would provide a broad base to study performance.

I would think it worth the money to hold it at a park like setting, no bells, less people, a secure sound proof fence, with lots of good places to hide. Open 24/7 it would be of direct benefit to parents.

The potential for peer to peer learning has been shown by Wrong Planet. Living within your mental culture helps.

I do not expect any great breakthroughs, just provide the least annoying place to grow and develop, Reducing parents to part time autism service providers would be a great kindness.

What is being done is not working, and if it happens that there is a lot more autism in the future, we should have some working model to deal with it.

The supports of a Kindergarten, the security of a Zoo, some plan for Autism becoming 5%, 10%, and a need to restructure childhood for many.

Curing the Future has never worked, preparing for it always does.

Here is my parallel monologue:

It is possible that the current group of individuals that might have ended up institutionalized, the locked wards as you have referred to in the past, may be the individuals that benefit the most from these newer behavioral therapies/interventions. Those individuals having severe communication handicaps, that don't go away on their own. ABA/Lovaas can potentially help some children take a detour from such a place.

From an objective point of view, the only reasearch that Autism Speaks has supported with actual results, to assist in this detour are screening tests for earlier intervention.

The intervention therapy evidenced as effective for some, that works, was here, long before the organization existed.

I'm not so sure that research is worthless, considering it could potentially provide some type of intervention beyond the current methods of intervention, that may potentially prevent some of these severe communication handicaps, if it is a perinatal or prenatal environmental factor that can be identified then prevented, altered or eliminated.

That's probably a long shot, but if the potential exists to provide a permanent detour to institutional life, I think it is a worthy research effort, if one is concerned about that part of the spectrum.

Government Statistics on Autism don't reflect the full range of autism, for the most part only those in school programs for the developmentally disabled. As far as the government understands that full range is out there somewhere developing on their own.

The same applies to most reasearch, it is conducted within that same group of developmentally disabled individuals, for the most part. Aspergers is rarely even mentioned in any research, until recently, and soon with the DSMV, won't be mentioned at all.

It is obvious that the government to this point, at least from the perspective of actual measurement and results, has not been very concerned about that part of the spectrum, except for the select few that are in programs for the developmentally disabled that the government must plan to fund.

Most autism organizations reflect the same statistics and that same group of autistic individuals, except for those that focus directly on higher functioning autism, understanding those they actually serve on a one on one basis.

It's done on a national level in the UK, unfortunately the US, a country full of differences, does not accommodate differences very well, unless there is a specific problem, and a specific program to fund.

The US government's work in that part of the spectrum is as insignificant as the work that autism speaks has historically done, in that area.

The government though, is the people, and it appears the people in the US, to this point have not been very concerned, whereas the people in the UK have been more concerned.

Back to my original point in the last few posts.

It's a cultural phenomenon, I think, above and beyond the government and/or autism speaks. It could even be a biological phenomenon, a result of a heterogenous society, that from a biological perspective is discriminate of heterogenity, or human differences, to a greater degree than homogenous societies, simply because they are so pervasive within heterogenous societies.

Those homogenous societies in Scandanavian countries, in general, take care of most their citizens. That appears to say as much about human nature as it does about their culture.

It may be related to why some of the folks in those scandanavian countries aren't too happy about current immigration trends. RDOS, your friend from Sweden, could probably speak to that part, better than I.

Geographically isolated areas don't seem to do well with the introduction of folks well beyond their borders.

History/prehistory is full of it, back to the Neanderthals, and there is probably good reason for it considering the potential transmission of disease that individuals are not immune to among many other factors, including subsistence and reproduction. For humans these individuals are identified by cultural and physical differences.

Cats are interesting, they don't understand our culture fully, but it impacts them in this way too. We have a 12Lb feral cat and a 20LB domesticated cat. The feral cat normally leaves the domesticated cat alone, probably because of the size difference.

The 20LB cat came home from the VET with one of those clear plastic lampshade looking devices one collars on a pet's head to prevent them from disturbing an area of infection.

The feral cat saw that unknown device as something beyond cat at the primal level of survival, and his immediate inclination was to seek and destroy. Another domesticated cat we have ignored him. Not as many real life contigencies for him as there was the feral cat, due to his altered reproductive capabilities.

We don't normally domesticate humans with quite as extensive methods as we use to domesticate cats, but human beings still exhibit this type of discriminatory behavior, differing, depending on their biology and cultural practices.

Research on "the pill" provides some evidence of this, on human reproductive discriminatory behavior, due to the introduction of that cultural by-product, related to domestication of human beings.

If one looks deep enough there is usually an environmental or biological factor for most every variation in cultural practice within societies and among different societies. In this specific case ranging from Ideology from our government with Combating Autism, to Autism Speaks, to the National Autistic Society and Autistica in the UK.

Really interesting, how they call Autism Speaks "Autistica" in the UK, seemingly attempting to match cultural expectations there, with a neurodiverse flavored organizational name.

It's really not doing much better than the insignificant organization it orginally replaced that did autism research; that mission, in general, is not well received in the UK, whereas in the US, in general, the same mission is strongly supported.

At least for individuals with Aspergers it appears that some are better suited to the cultures of other countries.

Or perhaps migration, in general, has a significant impact, regarding biology, environment, and culture, and how one does or does not adapt to the full nature of their new surroundings.

And finally, with advancements in cultural by products of all kinds, particularly advances in technology; every human being is born into a reality different than any of our ancestors could have imagined. That has to play a role too.

Changes in culture equal neuroplasticity, that is already a commonly accepted theory in cognitive science. In effect, neuroplasticity equals differences in neurology.

Neuroplasticity, could potentially affect the broader autism phenotype, expanding it further into the population.

Why bash autism speaks? Probably has something to do with the Cat, the lampshade collar, and his friends, both feral and domesticated. It doesn't matter if the danger is real or not, all that matters is perception.

Not interesting at all. They started by calling themselves who they really are ("Autism Speaks") and quickly discovered they were not welcome. The name change seems to have fairly well concealed their nature, which is one reason I try to remember to regularly post the link (http://preview.tinyurl.com/autistica) to their UK Charity Commission entry. (I notice that Autism Speaks (US) still had a £69,000 interest in them in 2010 - the year they changed their name.)


Because they do not speak for autistics. I believe we've said this before.

Claims that research is for hopeless cases is backed with numbers about eight year olds in Special Education. They will not spend their lives in Institutions, except school.

As it is all the numbers produced, we are talking about people who are in their third year of school, having passed two grades. This is The Autistic.

From many stories on WP, they continue in school. They become Teens, and complain! They are the one in a hundred, and there is no Mystery Majority in Institutions.

Autism Speaks has lied about the numbers forever, calling the Autistic Aspergers, and claiming a population of "Real Autistics" that does not exist.

Lies, fear based marketing, just like all the fraud sites.

Fears that your children will never leave home? Ask the parents of University Grads! It is an Epidemic!

Fraud, the misrepresentation of a material fact for personal gain, also known as Autism Speaks.

Show me 10,000,000 Autistics in Institutional Care to back up your claims.

My understanding is that the UK Autism Speaks arm absorbed the research organization "National Alliance for Autism Research" in the UK similiar to the research organizations absorbed in the US back in 2004; the UK arm became a separate and independent entity in 2007; then that separate organization, changed the name to Autistica in 2010.

No longer portending to be an advocacy organization; entire mission focused on biomedical research.

As long as the people in the UK are strong supporters of direct support to autistics and weak supporters of research, I doubt it is going to matter much what they call the organization, or who runs the organization, as far as potential success in generating revenue.

That's the part I find interesting, I think the lack of support for Autism Research is more of a cultural phenomenon than an organizational one.

The name "Autistica" matches neurodiverse language, but not the actual biomedical research that the organization does. Not sure how anyone could be fooled by what the organization does though, if they take the time to look at the Autistica website.

It doesn't appear that Autism Speaks was any less welcome in the UK than the previous organization NAAR that it replaced, over all funding raised by Autistica last year was fairly insignificant at 1.7 million dollars, but they doubled the success that the previous research organization NAAR had in raising funds, that was below 800K dollars.



http://www.autismspeaks.org/about-us/press-releases/autism-speaks-uk-announces-change-name-autistica


It is a common misconception that the Autism Speaks organization intends to speak for all autistics, because the organization is called Autism Speaks.

The organization created the name autism speaks, to reflect the fact that they intended to provide a voice for disenfranchised families; that is specifically how the founder describes his intent in creating the organization on the website.

That was my point in my comment about perceived danger, whether or not it exists. The organization is bashed by some for an intention perceived, that they speak for all autistics, that does not exist in reality, among other perceptions of danger that do not exist in reality, such as the organization seeks to promote the abortion of children with autism.

And instead, they predominantly fund genetic research.

I made no claim that research is for hopeless cases, I said this:



Many of the state institutions with locked wards, have closed down, but some do still exist, and some do still house individuals with Autism. I made no claim of how many individuals with autism currently exist in these institutions.

State institutional care now has become residential care for many of the individuals diagnosed and identified as having ASD's that cannnot live independently, that do not live at home with their parents.

The potential with early behavioral or cognitive intervention is that it may help autistic children gain self care, social and communication skills; self care, social, and communication skills, per available research, that are key in avoiding 24/7 care from others, whether it is state institutional care, residential care, or parental care.

http://en.wikipedia.org/wiki/Autism



Autism Speaks has provided the same goverment statistic on the prevalence of autism that most every other organization associated with autism provides, in the US; the same 1 in 110 number provided by the CDC, and the government; and before that the same 1 in 166 statistic provided by the CDC, and the goverrnment, before the 1 in 110 statistic came out in 2009.

Providing third party statistics from the most reputable sources available is neither lying or misrepresenting facts. It's close to the same official government statistic provided in the UK, resulting from similiar statistical methodology.

Other studies have been done by examining cross sections of demographics in that country, that suggest the official statistics do not reflect the entire spectrum of autism there, however pre-existing diagnoses are all that is counted for official government statistics, just like they are in the US.

You haven't provided any concrete evidence that Autism Speaks has committed fraud by misrepresenting facts for personal gain. There are many eyes on charitable organizations; if there was any evidence of this, the organization, and individuals responsible for fraud, would suffer real consequences.

That was the whole point, the families wanted to understand what was causing their children's difficulties, and were hoping the organization could provide solutions to those difficulties through research. Vaccines, at that point in time, were a concern that many had, that were a part of that research. However, no causal links were established.

http://www.autismspeaks.org/about-us/press-releases/autism-science-research-grants-funding-2011

The organization does support genetic research, but it does not predominantly fund genetic research.

It's a common misconception, but it doesn't match the facts as they currently exist. The current list of research awarded for the next three years by the organization is wide ranging, from environmental influences, prevalence studies of autism including the adult population, neurobiological influences, sleep studies, etc.; 47 awarded research grants that are complex and varied.

The Government numbers 1 in 110 are from eight year olds in Special Education.

That is third grade in public education.

While there may well have been developmental delays, by third grade they are functioning in the educational system.

Overall they seem to reach the same functional educational level as everyone else in the system, Half way through Eigth Grade with a C-.

Autism Speaks researches anything but the reality of Autism. They seek causes, and ignor the known pattern of growth and development.

The front lines of Autism are in the schools.

Autism Speaks is seeking Causes, to raise more funds for their cause.

It seems very clear they do not think Autistic people should exist, and want nothing to do with them.

They do nothing to aid the Autistic, only seek ways to eradicate them.

That is why they sound like a Klan Study about a Cure for Africans.

The organization's latest press release on research funded for the next three years quoted below, clarifies they are researching the reality of Autism, in doing prevalence studies that reach the entire population of autistics, some of which have likely been missed by current government methodology, that we have been discussing for the last few posts, because those studies are restricted to existing health/school records, for the developmentally disabled.

They are funding studies on adult development per detailed quote below from their press release.

They are developing new methods to increase access to diagnosis and early intervention services in underserved, low resource communities in North America and around the world., so they are directly involved in providing support to individuals with autism, that might not ordinarily gain that support because of disadvantages in gaining access to resources.

They are addressing adult autistic issues that the government has not addressed. Objectively speaking, that is a good thing.

http://www.autismspeaks.org/about-us/press-releases/autism-science-research-grants-funding-2011

And after that comes the study, "Autism, Boxers or Briefs?"

What colors do the autistic prefer?

Finding undianosed autistics, and exposing them.

Autism in zoo animals.

No one benefits from these studies but the Friends of Autism Speaks.

Do autistics need sleep? Yes.

I can see Autism Speaks workers going door to door in underserved low resource communities, hunting for missed autistics.

The study of imaginary treatments continues.

The horror of autism that is going to put your child in an institution for life, has vanished in adults who blended into their communities.

Now the private Department of Autism Security wants to hunt them down. and give their DNA to the Chinese.

Autism Speaks, a study in studies.

Autism Speaks, universaly hated by the Autistic.

Klan Speaks, doing a study of where Africans hide in the community, and when they sleep.

After failing as an Eugenics Organization, it is impossible to rebrand yourself as a member of the community you failed to exterminate.

An epic fail at public relations.

How about a study of why adult autistics hate Autism Speaks?

Yippee!! !! ! I'll go for this one...

I hate Autism Speaks because they want me gone.

I do speak for autistics. I don't even get it right, at times. But I try. They do not.

lulz! ?

This thread is probably 1 of a hundred on just this website that seeks to answer, basically, the same question, why it is that some adult autistics would hate an autism advocacy organization, Autism Speaks.

It makes sense that the marketing, portraying individuals with autism with real problems, in a negative way, offends those that feel the word autism is equivalent to their identity. And, for those that don't agree with the research focus.

However, you expressed that you have been a long term supporter of Autism Speaks, because you like the research they do in genetics. That's a reasonable opinion from one that understands the benefits of science.

This is what you said on page 2 of this same thread about autism speaks.



Since that comment and 37 pages later:

They took they the word epidemic off of one of their website pages, proof they were listening to this thread, but an action like that, is not an action that has the potential to benefit autistic individuals in a significant way.

Now they've expanded their research effort into the areas that you argued they were weak in, per evidence from their recent research awarded.

You argued that autism speaks is misrepresenting the facts when they only present statistics on third graders, now that they plan on conducting a prevalance study to measure and reach the prevalence of high functioning autism and adult autism, you suggest they are exposing undiagnosed autistics.

I don't financially support the autism speaks organization, I support the objective things they do, that do have the potential of helping autistic individuals. And from an objective scientific perspective, these initiatives do have that potential.

One of the biggest problems in the US is high functioning autism is considered rare, in part, because it hasn't been considered enough to study.

Adult autism is the same, it is not understood well, because no one has made a significant attempt to understand the prevalence of it on a scientific basis.

The closest thing there probably has been is this website, but that information is highly biased because only about 20 to 40 people out of approximately 1500, at any given point in time, viewing the site, actually post here.

For those adult autistics that want their voice to be heard, it is only fair that those that have no idea at all what adult autism is, that have the condition, have the opportunity to understand they are autistic, if they care to understand that fact.

The complaint has been that the focus is on those individuals on the spectrum that don't function well, part of the reason the organization has been bashed. If it is understood, from a peer reviewed study, that the majority of individuals in the country with autism are higher functioning individuals, there will be a much better opportunity for those realities to be portrayed.

Sleep problems are a serious co-morbid issue with autism; maybe it's the ritalin, or adderall in children co-diagnosed with ADHD, that causes the insomnia, I have no idea, but sleep problems can lead to mental health, and physical health problems, and is certainly a worthwhile area of study.

The work that is currently being done for the autism genome project does extend out further than autism itself, other genetic conditions have been evidenced as associated with the condition through research, such as 22Q11 deletion syndrome.

What this means is that for those children with that genetic condition, that can be determined through a blood test, is that they can be screened early for autism and provided appropriate intervention for potential better outcomes in their ability to function in life.

In supporting this research Autism Speaks is funding, one advocates for the autistic children with sleep problems that have no solutions for their sleep problems, the autistic children with GI problems that have no solutions to their GI problems, the autistic children that have no way to communicate with the world that benefit from earlier intervention, and the autistic adults that need support that have no idea they are autistic, or what autism even is.

My main argument for the last several months has been that awareness of autism and potential support for individuals is limited in part, because of limited government statistical methodology into the identification and prevalence of the condition.

It was suggested that they remove the epidemic language from Dana Marnames webpage, and they removed it. Proof they were listening to this thread.

It was suggested that they do a prevalence study in the US to reach those individuals that aren't being measured in government studies, in this thread. Tambourineman said they were already looking into this, and on December 21st, the organization reported they were taking action on it.

I take the problems that some autistic people do suffer with, seriously; I along with others, like to explore the possible, as well.