The Great 'NeuroDiversity' Swindle

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ImMelody,
that could be a problem [having wanted something similar done in the aut and LD organisations am in care with],the amount that people see given to each thing/part/whatever want to call it,has been given to only fund that organisation-and that part,and it cannot be moved-each part gets its own amount-being a LD residential services and NAS user-they wont swap funding around.
the only way that could even be changed,would be to get to those who fund it,that would only work if its regular people funding it and not the government,and they may actually want to fund the cure research more than another part,that has to be their choice,many here have said they will give donations to animal charities but not human charities,its the same sort of thing.


Agrees with ThisIsNotMyRealName on many points,people need to look at all sides of why theire is a want for cure or a alternative treatment,as well as looking at their own belief,medications do a lot for many different areas of autism-but not enough,there needs to be at least much better treatment available-a part cure if like,and am guessing that will come,unfortunately,am also guessing a lot of older adult autistics with low QoL in care will get left out because support staff and key workers see them as 'unchangeable' and 'unable to learn'.

autism differs a lot.
some people are almost housebound by their autism despite having all the support,adaptions,aids and specialist intervention available to them,some can have a fairly good QoL with not much support,whilst others say for them its no different to having an NT life.
autism is usually always thought in terms of severity,and not the quality of life-some aspies can have a low quality of life from their as,whilst a p/autistic can have good days,doing the things they want,and having the staff to support them.

everyone always mentions autism speaks when it comes to cure research,but they're not the only one thats doing it.
if am remember correctly,the national autistic society [UK],does such research,but would rate the NAS as the most understanding,supportive autism organisation have ever heard of and experienced as a full time service user,they treat everyone as individuals,and have support as main cause.
maybe its individual organisations,and how they go about things,that a lot have problems with,rather than only the idea of a cure-or similar instead?

am not a supporter of genetic testing,if that means to be used like with downs [killing downs babies before being born],but there are people who want it,so it is their choice,however much others dont like the idea of it.
many organisations are trying to change the way people see downs now,those in uk with a tv will probably have seen those downs adverts on tv,so parents are slowly being educated,education is what is needed on autism,to help parents and others understand better.
and maybe organisations need to make things a lot easier for parents to get help or support,so parents know the help is there if they do have an autistic child.

I don't like the idea of a cure because there will never be proper consent parents will give it to their child and not allow them to choose for themselves. Even if they did choose would they be able to make a proper decision. Personally if anything about a cure would change who I am I'd rather die then take it. If I had a child with it I wouldn't gie them a cure. Who I am today may be partly because of Asperger's so why would want to change a winning formula?

Outside of this tricky debate about selective abortion, I just don't like the term "neurodiverse" used to describe people on the autistic spectrum, as opposed to "neurotypical". If anything those of us considered on the autistic spectrum, as a group, should be neurologically homogeneous in a sense.

I think this is where I get upset. I know people in Autism Speaks from my local state chapter. They do this huge massive walk every year. People donate so much money. And I never see anything given back to families. Whereas my local Autism Society does a puzzlethon each year. Some does go to research, but some also goes back to families and to groups caring for those with Autism.

What's wrong with it going to both? All of these families would never stop educational, behavioral and rehabilitative services for their kids. Why then, don't we help them a little, by giving a small fraction of that money raised?

Autism Speaks greatest sins are not the hard science research they sponsor, or even the stuff that looks a bit dubious. In fact from what I've seen some of it is quality stuff with practical use and advancing the state of understanding. Yes, understanding the genetic roots of autism is an IMPORTANT aspect to understanding the physiology which in turn leads to understanding (and hopefully acceptance) of how better to help ASC people reach their potential and their equal, natural place in society. I don't even consider their high overhead that huge a sin, in light of how the "charity business" works as a whole in the US. *shrug*

The biggest problem with Autism Speaks is how they talk about "cure", the vaccine stuff written right into their principles (at least it was?), and the image of autism they present to the public. That horrid video ("Autsim Everyday"?) is the perfect example of the later.