Curious: What exactly do we hate about Autism Speaks?

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I know at least one ASAN leader who is an AAC user. Making assumptions about people's abilities based on their resumes = not always something that works very well.

ahogday, I know you mean well, but you have some serious research to do when it comes to understanding what different kinds of autistic people can do. Not everyone with a college degree is "Asperger's." Sue Rubin, for instance, is soon to receive a college degree. I dare you to say she's "not that impaired." With accommodations and support, people who seem very disabled can achieve a lot more than ignorant people oftentimes think they can. No, I'm not saying that every autistic person can go to college (but so what? There are other ways to be happy), but it really bothers me that you continue to perpetuate stereotypes about autistic people's abilities.

It's true that the job opportunities ASAN has posted have required a college degree, and I certainly wish that we had more job opportunities to provide to all autistic people. There, however, we are rather limited by what the corporations which approach us request. We do not create jobs. We can only facilitate autistic people getting jobs directly when other entities have jobs available and approach us.

I don't really subscribe to this idea. People diagnosed with Asperger's syndrome (which the DSM5 is about to abolish) are really only trivially distinguished by things like "no early language problems". At the end of the day, those given AS as their diagnosis may be a little better at communicating (but Temple Grandin was not diagnosed as AS, and she communicates pretty effectively.)

One of my pet peeves about "Autism Spectrum Disorder" (now being re-branded, over here, for no reason I can fathom, as "Autism Spectrum Condition") is that people assume it's a simple straight line, along which you can be placed. It's not.

I have a lot of strengths, which I managed to get through life with - (almost) totally masking my abysmal weaknesses in other areas.

I think most autistics will benefit hugely from fairly minor supports - but targeted at those areas that cause them problems in today's society. One of the biggest supports would be if that society in general was a little more aware of autism.

I don't see Autism Speaks doing much toward that goal.



(P.S. I watched "Mary and Max" last night. Brilliant!)

I've never stated or suggested that everyone with a college degree has Aspergers. I was a non-verbal child and don't have aspergers, and have three college degrees, so yes, I think I understand that's possible. I lived it.


The board members I was speaking of are the organizations board of trustees listed on ASAN's national website. One with a PHD working as an english professor, one a licensed attorney, and one working toward a PHD, in the IT field. I stated there were no non-verbal autistic individuals on the board that use communication devices to communicate that I am aware of.

There is no indication that these individuals are non-verbal, in the public record beyond their resumes, however I'm not privy to their actual diagnosis, so that is why I qualify my statement with "that I am aware of".

I'm not suggesting that there isn't a leader somewhere in the country in a local chapter that might be non-verbal that uses a communication device. I would have no way of knowing this.

There are are a great many verbal autistic individuals that use communication devices. Individuals with Aspergers use laptop computers in school to facilitate their issues with fine motor control in written communication.

I also did not, say that non-verbal autistic individuals can not get college degrees. I have personally provided an example here on this site, of a non-verbal autistic individual that with a communication device has delivered the commencement speech at their high school, with plans to go on to college.

And, provided another example of a young non-verbal woman who smeared feces and banged her head against the walls, that was provided ABA therapy to use as a communication device, that provided an understanding that she was aware of the world, had depth of insight. Before the positive behavioral modification techniques were provided for her to learn to use a keyboard, it was thought that she had little understanding of the world around her, and that she was profoundly ret*d.

Once she was able to communicate she explained that her life was one of sensory torture. She told her father if he could just be in her body he would understand the misery she endured.

It's beyond believeable to me that some would suggest that autism is not inherently disabling from a medical perspective for individuals like this. This is the ideology that has been expressed by some that support ASAN; that to me is ignoring the obvious facts that are available, for anyone that cares to do the research to find out the facts.

It's very likely that if a prevention, treatment, intervention or "cure", were found for this young woman's particular torturous symptoms, related to her part of the autism spectrum, she would have a more fulfilling life.

I also have provided research here that shows that individuals considered mentally ret*d that are non-verbal, score well on IQ tests that do not measure non-verbal intelligence. That's reflective of the young girls experience presented above, but it doesn't make the torture she feels in life go away.

So, yes I have done research in this area; apparently you don't read all my posts, and I certainly wouldn't expect you to.

On the other hand not all non-verbal individuals accommodate communication this way, some do live in institutions and require 24/7 care, and not all non-verbal individuals have the abilities to go to college, nor do many other people with autism and aspergers syndrome.

It's also a stereotype that some hold to assume that most people with aspergers go to college, and they all have high IQ's, just because individuals with cognitive deficits aren't part of that diagnosis. There is no evidence to back that stereotype with either.

The bottom line is there are many different needs to be met by the variations of autism on the spectrum.

For those that see research for a cure for disabling symptoms of autism and co-morbids as morally reprehensible, that's fine for their personal version of autism, but they can't speak for the young woman described in the paragraph above with autism.

Nor, can Autism Speaks suggest that those that don't want a cure for themselves, need a cure., as Autism Speaks clarifies in the recent interview done with the organization.

As the recent survey in England showed, I think there a substantial number of autistics that are not diagnosed as such, particularly in the area of aspergers.

I agree for a large part in your statement here, I'm not sure if it is most people on the entire spectrum, but I'm sure there are many people with higher functioning autism, which by the way Temple Grandhin is categorized as HFA, that would gain much by minor supports and better awareness in society, and no I don't see autism speaks doing much toward that goal either.

Their focus is on those that need major support.

Indeed. Autism Speaks rather preferred it when they could get away with speaking instead of autistics. Now they are quick to speak against any autistic with the temerity to speak for themselves. Maybe I'll like them better when they change their name to "Non-autistics Listen".

I've heard this but currently the evidence seems to suggest the opposite. Offensive comments remain on autism speaks websites largely ignored.

Autism Speaks focus was on Autistic Children THAT needed major support. The result is : everyone THAT received a diagnosis of Autism had access to a plethora of services designed specifically for Autistic Children. Thus, High Functioning Autistic children benefitted from the efforts of Autism Speaks, too. And, due to the coming changes in the DSM IV, Aspergers Autistic children will soon have access to a wide variety of medical, social, and educational services compliments of charity organizations such as Autism Speaks.

Speech Therapy, Occupational Therapy, Physical Therapy, Early Education Intervention, Heath Care Waivers, School Vouchers, etc etc were made available because the agenda was to establish and support the needs of children who were severely affected by Autism. As a consequence, a lot of services were made available for those across the spectrum.

This IS what I was trying to explain to SELF ADVOCATES. Basically, Autism Speaks presented and represented the worst case scenario of Childhood Autism and children benefitted across the spectrum.

This IS HOW it works.

People who appear very capable receive the LEAST amount of support from our society.

Adult Autistics who want services across the entire Autism Spectrum are going to have to use similar methods as Autism Speaks to achieve THAT goal.

IT is, what IT is.

TheSunAlsoRises

Your text is too loud.

Actually, I would argue that parents do not necessarily understand regressive autism or autism of any kind, and many make it quite clear they don't really understand much at all. What they understand at most is what it is like to parent a child who has regressed.

I would say the people who have actually regressed have a better understanding than anyone else, assuming they're given space to be experts on their own experiences - something which routinely does not happen (and I suppose many would argue that they can't because they can't communicate, etc. but of course many can).

I picked that out because I don't really agree with the tendency to ascribe expertise to people for being around something, even if they interact with it daily. For that matter, I've been around a regressed autistic child (four or five years old, nonverbal, got along with me better than anyone but his parents) fairly regularly over a two year period and I wouldn't claim to speak for him or his experiences. His parents were pretty honest about the limits to their own understanding of what was going on and I believe were doing the best they could.

Sorry, poor wording on my part. I'm not suggesting that parents or grandparents are experts on regressive autism because they have direct involvement with their children and grandchildren, my intent was to suggest that individuals that haven't been physically exposed to regressive autism can't possibly understand what the unique child with regressive autism's needs are any better than the parents do.

Some people have stated that because they have autism they understand what these children need in life better than the parents. If they haven't been directly involved in the care of a child with regressive autism, or have it themselves, that's not a reasonable statement.

Each child's needs are unique, and can't be understood well enough to meet the child's needs, without interaction with that unique child. I know you understand this through personal experience, however there are those that apparently do not understand this, from the statements that they have made.

The best understanding of it, so far, per unique individual experience, that I am aware of, are the cases where older children have developed an ability to communicate their condition with adaptive means. Providing the parent a better understanding of what the child's inner experiences are.

Before this it was thought many of the children were profoundly ret*d and had little awareness of the world around them. I provided an example to refute this stereotype, a few posts back, that I have provided several times in the last year, here.

Thank you for clarifying this. And I do agree. I think autistic people certainly have insights on what autistic children may be thinking or experiencing, and even relate our own experiences to described behaviors, but it's impossible to know exactly what it's like to be someone with more severe symptoms and cognition difficulties.

Autistic adults are the main byproduct of autistic children.

Now Marketing, Grandparents, Parents, Psych Majors, and Charities can claim to be experts, but only one group has lived it.

I was fine as a child, except the reaction of experts, Teachers, Preachers, Neighborhood busybodies, who just had to mention that I was different, and should be burned at the stake.

So I see that same group now posting about how it is about autistic children who need to be fixed, and the adults who they became can just shut up.

By the numbers, which have been avoided, one in a hundred is not going to spend their life being non verbal in an institution. That may be the reality for 1% of the autistic, but the rest will just grow out of it as they always have.

Fear Mongering by Marketing. Using hopeless cases for poster children, focus on the rare worst outcomes, and dismissing the rest as not being "Real Autistics."

That Reality is only the view of Charities who Market misinformation for a living.

Intense treatment of the most disabled has not been shown to produce results. About the only thing that did work was getting their fingers on a keyboard.

In my personal experence, the most important things about me were my hand writing, and making eye contact. Animals four times my size yelled at me and told me how worthless I was, and I could sit there till I could write Cursive like they just learnt me. There was a constant threat, I am big and important, I can do anything I want, you are nobody.

Now I am being told I am worthless because I survived anyway.

Fraud, the misrepresentation of a material fact for personal gain.

In general, there are hardly any services out here for Autistic Adults. The focus of Autism has always centered around children with severe developmental problems related to Autism. So, ALL Autistic ADULTS, not just those with Aspergers, have had their unique individual needs ignored BY society.

Having said that, there are adults who may need only slight accommodations BUT there are also adults who will need a lifetime of services. It is a spectrum. Who is going to advocate for the latter group of adults i named? Who is going to advocate for those who lie in between ?

What is going to end up happening is THAT a group of parents with Adult Autistic children are going to align themselves with a powerful organization that can help them obtain the services that their adult autistic child needs. Eventually, the parent-child and parent-adult Autistic factions will come together, offer each other advice, and HELP their children make a smooth seamless transition from Childhood to Adulthood.

I take into consideration that self advocates are exploring new territory, and i give them credit for being out there. It takes courage. My humble advice to you is : Do not forget that it is a spectrum and if you want meet the demands of a particular group inside 'the spectrum', someone will step forward and do it.

Yeah, your posts are too soft. meow. LoL.

TheSunAlsoRises

Your motivations seem unusual. And it's a chilling thought that those like you are trying to make real disability taboo for discussion, even in the 21st century. Autism is not a childhood disorder.

Your text is kind of cute

Meow

The reality, of those who are diagnosed and identified as such, the 1 in 110, are eight year olds, for the most part that are in special education classes for the developmentally delayed, per government methodology of measuring ASD's.

The government estimates as many as 500,000 of these identified children will need support into adulthood in the coming decade, as they transition into adult life.

Most will be accommodated by their parents, as the available statistics on identified autistic adults suggest now; the 80% that rely on parents and 90% that don't hold steady employment.

There are likely many more individuals with autistic traits; up to 30%, many which function okay in adulthood, but these are not the individuals diagnosed and identified, where the concern of government and charities lie.

It is those 8 year olds in schools for the developmentally disabled, the ones that are for the most part, identified in the 1 in 110.

For many of those who have "grown out of it", they likely don't have a diagnosis, or have any idea that autism could possibly apply to them. For many of those individuals autism speaks likely doesn't mean much more than a puzzle icon they glanced at on the bumper of car.

Problem is, as recent research in the UK, indicates, where autism was studied in a cross section of the country, and identified in 1 percent of the adult population, many of those unaware of their autism, had definitely not "grown out of it", and were experiencing struggles to survive in life.

This, however was not a measure of the broader phenotype of autism reported much further out into the population.

Those people that do experience their autism as a disability, who do not "grow out of it" need diagnosis, identification, and support where possible and appropriate.


Behavioral therapy has shown to be effective in some developmentally disabled children with Autism, from recent research.:

http://yourlife.usatoday.com/health/medical/autism/story/2011/04/Research-Autism-treatments-fall-short/45725852/1





While there is at least one other site, where autistic adults voices have been censored by authority for differences in opinions, or just for looking too much. There is no significant evidence here that I see of anyone asking adult autistics to shut up.

And it does not appear to be something that is happening, on Autism Speaks Support group sites. The evidence is clear. All one has to do, is go there and look, and one can see offensive remarks made about that organization, by adult autistics, that remain on their support sites, uncensored.