Demographics of who does/doesn't want a cure

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I've met people who actually had a literally blind facilitator and then switched letterboards to a different layout without him knowing and then turned it upside down. The communication was very obviously proven valid (while the facilitator kept asking "Are you sure you want to hit THAT key?" and the girl in question typed perfectly accurately). The problem with doing it in every case to prove the point, is that it's not always just a matter of doing something entirely by touching someone and nothing else. Sometimes it involves a complex interplay of the person trying to aim at the keys and the facilitator helping them not overshoot or do other things that can only be done by sight.

I'm not really fond of calling something FC though because it's a label that has become almost meaningless. I really do sometimes need someone to help me move (not just to communicate, and it's a known thing in parkinsonlike conditions, so much so that they even train dogs to do it and my cat learned to do it). And sometimes that includes type. And when it happens that way, I've had people really resent being called facilitators because they never learned the actual technique called FC, they just grabbed my arm when they realized what was happening to it and tried to hold it away from the keyboard so I could move side to side instead of just pressing down into the keyboard (to give one example). In that case the person was basically winging it based on their understanding of me and my motor skills. At other times I need someone to touch me near the joints so I can find the body parts and move them. Both of these things look like most people's idea of "FC", but they aren't the same thing at all. And people who do promote FC have a tendency to want the term to encompass every possible way of physically assisting typing because that lends more validity to it. (Even though it's a very specific way people are trained in reality.)

That said, I actually know several people who have speech and who use FC in ways that they absolutely confirm with their speech. They'll answer yes or no as to whether what they've communicated is accurate, read it out loud, etc. In fact most people I've met who use FC have speech that they use alongside it in ways that make it obvious they're typing what they're typing. And it seems like it's wrong to treat their speech as somehow different from other people's speech unless they say it is. (Like in my case where my speech is almost never the same as what I'm thinking.)

But yeah when I said everyone could communicate, I meant every possible mode of communication, not just language or symbol-based communication.

I realized afterward when I read earlier in the thread, but I let my post stand because I wanted to say what I did with or without the possibility you might have meant me.

I generally say most people don't contribute sarcastically when someone makes assertions about PWDs not contributing. I don't agree with it and wouldn't say it when I am less annoyed - I liked something you said earlier about taking care of your cat, possibly because taking care of my cats is my primary responsibility these days. It's a grounding thing to remember.



I should have said this as well, but it was definitely what I was aiming for.

If there was such a thing as a cure, I would take it in a second. I have mild AS, but it has wreaked havoc with my life. If I could deal with people, have friends, a job, and not have to worry about melting down at the slightest provocation, I would certainly want that.

All I mean is that it's easy to point out what good you've done. It's highly visible. To me, at least, it's been really helpful in coming to understand the world. I'd be surprised if I'm the one who's benefitted most from it, or even in the top 50. I'd bet money there's at least one person alive who wouldn't be if not for what you wrote. Then again now I feel trapped in a catch-22 because if there are such people they're probably disabled, so anyone that I'd want to make a utilitarian argument for your value to would probably not consider that valuable. You practically have to already agree that that argument shouldn't matter or is the weakest before you'd even agree that that argument is possible.

Aaargh this whole thing is confusing. I wish we were worried about something simple like what kind of assistive technology would solve some problem or other.

You bet.

Has anyone seen the brain imaging studies here?

For one : Would drugs cause the corpus callosum to enlarge enough to handle the inter hemispheric communications?

For two: how about that white matter volume? Drugs, neurofeedback ,etc. have an effect on rewiring here?

3 ) How's about that executive dysfunction: is this due to chemical imbalances, or is it incontrovertibly hardwired?

I suppose drugs could be mitigating factor if it is indeed a neuro transmitter imbalance.... (as depression).


From what little imaging studies I've seen ( one posted here recently) makes this more 'in stone' in that the brain is globally different from the top down.

Are these studies flawed?^If they're not, and I do believe they're not; there is enough here to make this an airtight case in that it is global and final.

I'd think it a safe bet that many parents do hope that it is indeed pseudoscience, though ^.

Under these conditions, given that the studies are statistically valid, how could a cure arise from this?

That would be the question.

Myself, I'm a little lost on the cure take in these discussions....

Whoa.

Given those conditions( the meltdowns, ETC.) and if that is considered mild AS, then I'm way off.

I agree with what you're saying that a cure is not actually possible, I'm just talking theoretically, if it were possible not to be AS, I would choose that option. I'm not in the "curebie" camp as I understand it, though I haven't really followed all the ins and outs of that debate.

Pretty sure Mdyar is more surprised by how you described what sound like extreme difficulties and refer to it as "mild" AS.

I think the difficulties I described are fairly typical? My AS is mild in that I don't have many of the other common traits, other than the ones I mentioned.

>>High-functioning, anti-cure

I think that theoretically a cure would be a wonderful thing for some individuals and some families who are suffering immensely bcs of autism (this is not to say that autism hasn't also brought happiness to many ppl/families). However:

1) It is unproductive to focus efforts/resources on finding a cure rather than on intervention seeing as we are SO far off in terms of medical science from having a cure at this point, and a cure may be an impossibility. We are talking about a disorder that arises from a complex interaction of many different genes (as well as possible epigenic effects) that effect multiple brain regions, and may effect different brain regions differently in different individuals. Many psychological disorders can be described in this way, which will make "curing" them very difficult. Instead of searching for the panacea for autism, I believe we should focus efforts on developing and putting into place effective interventions that may ameliorate the detrimental impact that symptoms of autism can have on individuals and families.

2)I think that way far off in the future if there was a cure that involved altering genetics or brain structure etc. to eliminate autism or autistic symptoms this could lead to serious problems in society,: it is a slippery slope. Once you decide it's okay to alter genetics to eliminate autism or AS, what about other psychological conditions? What about personality traits that are unwanted (or considered unwanted by prospective parents etc.? This could lead to eugenics, and/or lack of services/extreme discrimination against the smaller number ppl with disabilities who would still exist (bcs not everyone would subscribe to the idea of altering genetic makeup and children with disabilities would still be born but the resources/ interventions available for these individuals would likely decline) . Have you ever seen Gattica??? I do not mean to suggest that we should be afraid of scientific advancement bcs society may react unfavourably. However I think there are ethical issues to think about: I think even if it was possible to cure autism the potential negative impact on society should be considered.

Oh, I forgot:

High-functioning, anti-cure.

I'm into future science and they are working on finding ways to cure many diseases and disorders including autism. They are trying to manipulate genes and learn every detail of the human brain. I'm interested in understanding more about the brain but not in the cure. Just look at how far we have progressed in the last 50 years. A cure could be 10 or 100 years away. We don't know.
I would prefer something like ADHD medication that wears off in 6 or 12 hours.

Also, I too am defensive about people saying that people with severe autism can't communicate at all and are somehow lesser forms than those more high functioning. Sorry if that offends but I can't word it any other way. I have communicated with severe autistics online and some of them know more words than me.
I don't work, barely socialise and still live at home. I'm really contributing nothing to society except sharing how hard it is for me to live in it through my blog.

Thanks. I have started wearing sunglasses more. I'll look into AIT but what is the air filter for?

To improve air quality. Maybe it would smell better if it were less polluted. Just a random guess, though. I can only personally vouch for AIT.

I'm not trying to start any fights here, but now I'm getting confused as to what "mild AS" means -- Bee33's comment is a pretty good description of my situation, which I have though of as "mild" due to not ever being tagged "low (or even moderate) functioning."

i would like a cure, for my children, so they won't have to struggle as much. and since this seems to be genetic(at least in my family) i'd like a cure for my grand-children, future neices and nephew, cousins and their kids, ect. not to force them to do something they don't want but to make things easier for them.