Stop Bashing Autism Speaks!

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Autism Speaks has been quite useful. They have disproved everything they set out to prove, and been the main motivation for others to explore the range of autism.

Alex for one has benefitted, and the Autism he produces, seems nothing like the Autism Autism Speaks claims.

While they do show the narrow range of NT thinking, there are a lot of NTs.

Having followed the story from Drugs are the answer, followed up by legal intervention, to Genetics are the answer, till even grant applicants can come up with nothing, and have to admit it is the human condition.

It has narrowed down to a claim that some Behavioral Therapy helps some children, who might be autistic.

My question, What Therapy? Who was helped, what was their age, Dx, and what treatments for how long. No answers yet.

Since they claim the worst of the worst is Autism, the hopeless cases, makes a claim that some were helped even more questionable.

The track record has been a string of gusses, each disproven in turn, and now with massive funding, Autism Speaks is coming up with the same, no one has any idea.

While this is the status quo for autism, a recently recognized version of autism, has been widely accepted. Autism as seen by Wired magazine, is not the Autism of Autism Speaks.

While the NT leadership of Autism Speaks turns to Professionals, we who are not children, lack faith in Professionals, develop self education in many fields, and see computers as a mirror of Autism. This Applied Autism view is in conflict with others, being as we are stuck here, and making the best of the hand we were dealt.

While they take years of training in clinical methods, we see autism in contrast to a larger culture, which tends to self destruct. We have a stronger outsider view on almost everything, from Culture, to Economics.

In the older, pre Dx Free Range Aspies, Autism became a sub culture, was ingrained and developed, long before we connected it to autism. 59 in my case. I called it Scorpio Biker Syndrome, and contrasted it to cage driving conformist.

This is a fairly large sub culture, and Autism Speaks has managed to insult it. Bikers, Nerds, Geeks, are cultural icons. While it seems we all agree that Autism is present, it is not like we are going to change, and we have been told we were wrong before.

Autistic people have always been around and found a place to fit in. They survived outside of the major culture, and found ways that worked for them.

I have followed Autism Speaks in hopes of learning something useful. For all of their money they disappoint me. Wrong Planet is a reaction to them, and there I learned that many of my ways are shared by others. Autism explains a lot, could be very useful, but only if developed by those with some insight.

Redacted

It looks like we will never get therapy for $60,000 a year, for ten years.

The Wired article mentions several people, the autistic, and it seems there is an other side, not stock human, fit to function in the current world, but word using and able to interact to some degree.

I like the artist describing her painting, I do some photoshop, enlarge and sharpen, manual, and those rainbows are real, the defraction of light around all things, which we mostly filter out, but that is the way the world looks.

My view, Autism Speaks takes the worst view, the reality is over time we become more like other people, and older people as I have pointed out become more like us.

There is a stop and reboot, the differance in thought and perception comes on strong. They move onto another development path, and it seems all effort is to get them back on the standard rails, which does not seem to be the outcome.

I see this as a symptom of a larger trend, I my life I have observed Neotony, And the Information Age developing. We are not the same people we were fifty years ago, and a lot of that change has been the rise of Geeks, Information and Technology.

Older than me Arther Clarke wrote Childhood's End, about a point that we were converging on where the children became different, understood each other, but were different than their parents. I do think he went a bit far.

It is a watershed, all prior generations could learn about the past generation and carry it on. A study of the recent past was suitable for times of slow development, but now development does not wait a generation, Captian Kirk with his big belt mounted communicator, to an iphone.

Just processing more information can lead to different development, Just consider the hours of TV that most small children are exposed to. I remember my girl in diapers, non verbal, who wore out several copies of Look Who's Talking Now. She could load a VCR, knew all the buttons, long before she could speak, and asked for a new tape when she wore the old one out. That was in her contol, but she also watched a lot of other TV.

The input load on small children has gone up considerably. TVs got larger, I read a blog by a woman who wrote of her daughter, now it is Dora The Explorer, and a pre verbal kid who knows DVDs, Netflix, and surprised her with "Rent It" She also mentioned her daughter learned Spanish on her own.

I knew another who when I showed up with the first laptop she had ever seen, She had been using my kids desktop, Motioned that all of the computer was in one, Which she saw as about time, her size, and said Care Bears, which was what she had been watching. It took her all of a few seconds to start using the first laptop she had seen.

She had very few words, but learned to type Care Bears, She did not know her ABCs, but knew what Care Bears looked like. When I unplugged the phone line from the desk top, plugged it into the laptop, She understood the Internet came through that wire. She was using a few single words, was about two, but could make the machine give her Care Bears.

Before she could speak, learned her ABCs, she was using written language to control machines.

As a treat she took me into the living room, loaded Fox and Hound, in the VCR, and told me the plot, They were different, like us, but friends. She shared her favorite movie with me.

I thought her learning slowed down when she was potty trained, wore clothes, had to learn human rules, a vauge and confusing thing. About the time she started school her learning picked up again. I think all kids go through ups and downs of learning, as they are trying to process new things.

Autism is extreme, but the pattern remains, Fast forward, slow to a stop, lost ground to an outside observer, then development on a new path.

I think the increased input may ret*d the process of neuron pruning, causing more than are used to get retained. Like the Neo Cortex, how long did it take to get control of that?

We did not grow larger brains until we used them. The inputs of children are now far beyond my days of playing with a toy on the floor. I think I grew up with a lack of input, there was hardly anything to take apart. I was fifteen before I did my first frame up motorcycle rebuild. Hardly any tools, books, but I did it. I rode that one for years. I learned to fix broken machines by taking them apart.

I learned from the work, I am fairly sure the Silicon Valley kids grew up with TV, Computers, music, cell phones, and processing overload might be the cause of run away brain development. Excess inputs retarding the neuron pruning, causing a crash, which when they do start developing again, now have a lot more neurons to apply, and hence, a differance of thought and perception.

I do not think we are evolving, like a Neo Neo Cortex, but there is a plastic range, and stepping over a threshold of neurons, is going to produce a result. It does seem to happen in highly intelligent families, who would have the latest gagets. As I mentioned before, upper class Victorian families seemed to have produced children who were kept as babies until six or seven.

I do not think we should try to stop it, but some adaption is needed.

It seems to be true that Autistics have more and denser neurons, and larger heads. The cause seems to be more inputs leading to a lack of neuron pruning. It is becoming more and more common.

Type one autism would not be missed, it is noticable. That it seems to have increased 300% in a decade, points to it continuing to increase. No Cure, no Treatment, Just dealing with the result.

I think that is where I, and many others differ with Autism Speaks, we have to function as we are, not as the past thinks we should be. We are the mechanics, geeks, nerds, that make your world run. It is our world too, and the future will be different, much different.

I think in terms of Applied Autism, of developing our differance.

Both the biological and cultural baselines are moving, some good some bad. In the fifties people like me were called Bookish, we read, odd behavior, and spoke like books.

Not playing with other children, having limited social interaction, was basically ignored. I did my school work, wore clothes, no one noticed.

Later I would have been put in special education, and still later, mainstreamed back.

The flaw of special education was isolation. I see that happening now, raising children isolated then wondering why they cannot involve themselves with the world. They have no idea what the world is.

I may have been the bystander, but I was there learning by osmosis.

While there has been more push to higher education, what I saw was after school, most never read a book. I continued, and the concept of lifetime learning, doing more than one thing for a living, was still in the future.

I got my first job in computers because I was a good motorcycle mechanic, and could read tech manuals. Both were self learned.

Youth did have it's problems, but developing my natural talents served me well later.

This is what worries me about Autism Speaks, the must cure idea, my own example of that was my handwriting, and spelling. Demands that I become something I was not ended my education at thirteen. While I was very good at all other subjects, I was tortured over handwriting, spelling, till everything fell apart. I lead my class in Math, Science, Reading Comprehension, but all they cared about was hand writing.

I walked away, withdrew, would have nothing to do with them. It was my only defense.

My fear is that ABA would produce the same results, withdrawing forever from some things, and never doing as I did, going my own way and developing my natural talents.

Since we are now talking about pre school age children, all development is at risk. The reaction I would expect, its what is shown as the worst of autistic children.

Constant demands that I do something I could not, lead to making a real mess of my life. School spilled over to home, and at thirteen I went out and got a job. My whole world had turned on me because of Cursive.

The simple answer for parents, teachers, school, was it was all my fault.

I barely escaped, younger children cannot, their only defense a meltdown.

ABA badly done could be responsable for a lot of the damage seen.

Just like my teachers who were going to make me write cursive if it killed me.

I still have a bad hand writing, the most I wrote was checks, but I did get a typewriter, then a computer, and have written several books. Now I use a debit card, scratch my name, and that is good enough for the world.

Like my Teachers, the Therapists are just doing what they are trained for and paid for. It must be the childrens fault.

Stop bashing Autism Speaks?

Stop this thread!