Autism speaks?What's the truth?
Wivil
Yellow-bellied Woodpecker
Joined: 13 May 2013
Age: 28
Gender: Female
Posts: 64
Location: why would I tell total strangers this?
I'm indifferent. I've heard some good things and I've heard bad things. Then again, the bad things have been from here and there's definitely a bias against anything that promotes pro-cure research amongst many outspoken members.
If you want a honest and unbiased opinion, you won't find it here.
i tend to believe they have the best intentions, but the way they show them is lacking at times.
they do good work for the worst cases of autism (the ones you see/hear about in the media) but for most people, their efforts are neutral at best.
sometimes, the work of autism speaks makes me keep my diagnosis a secret, becouse "yeah, i have heared of that condition" is a red flag for their understanding.
many times i have overheared conversations about how autism is bad and should be locked away, period, i have to fight the urge to prove them wrong at thise points, but i'd never win those arguments
There really needs to be a middle option, but I think they are more a voice for the "victims" of those with Autism (sic) than for the autistic.
They would like to find the cause and cure for autism (which I do approve of), but I'm not certain they care as much for the people who have autism as they seem to care for those who are caretakers for those with autism.
daydreamer84
Veteran
Joined: 8 Jul 2009
Age: 39
Gender: Female
Posts: 5,001
Location: My own little world
I'm also indifferent. They are too focused on finding a cure for autism which I think is a dead end and that they should focus more on treatment of symptoms, accommodations and help for people and families of people with autism. As another poster said they also seem too focused on the caregivers of autistic children and on children as opposed to adults IMO. That being said, I don't think they're the bane of our existence or the embodiment of all evil.
They think too much about low-functioning autism, and remain indifferent to HFA and Aspergers. If there was a cure, they would give it to us without much choice.
Whenever someone brings up the idea of a cure for a neurological aspect, you can't trust them. While there may be behavioral therapy, the individuals may not want to change who they are.
_________________
Shedding your shell can be hard.
Diagnosed Level 1 autism, Tourettes + ADHD + OCD age 9, recovering Borderline personality disorder (age 16)
In general, Autism Speaks has done a lot of harm, because while "raising awareness" they've given the general public the idea that autistic people are hopelessly incapable of anything, incapable of love or happiness. They've created a lot of fear of autism and raised a lot of barriers on the path to inclusion and equality. They focus so much on how hard it's supposed to be to parent an autistic child, how horrible the experience is. Autistic people have little or no voice in how they run their organization. They're trying to speak for us, and effectively, to silence us unless we agree with them. According to Autism Speaks, if you can speak, you're too high-functioning to have anything relevant to say, and if you can't speak, then they have to speak for you.
I don't think it's intentional. I think they just don't think about what it is actually like to be autistic. They just want to eradicate autism, make everybody neurotypical. The way they're going about it has made things worse for everyone, autistics and families of autistics alike.
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daydreamer84
Veteran
Joined: 8 Jul 2009
Age: 39
Gender: Female
Posts: 5,001
Location: My own little world
In general, Autism Speaks has done a lot of harm, because while "raising awareness" they've given the general public the idea that autistic people are hopelessly incapable of anything, incapable of love or happiness. They've created a lot of fear of autism and raised a lot of barriers on the path to inclusion and equality. They focus so much on how hard it's supposed to be to parent an autistic child, how horrible the experience is. Autistic people have little or no voice in how they run their organization. They're trying to speak for us, and effectively, to silence us unless we agree with them. According to Autism Speaks, if you can speak, you're too high-functioning to have anything relevant to say, and if you can't speak, then they have to speak for you.
I don't think it's intentional. I think they just don't think about what it is actually like to be autistic. They just want to eradicate autism, make everybody neurotypical. The way they're going about it has made things worse for everyone, autistics and families of autistics alike.
This is a very well articulated and logical argument that Autism Speaks has harmed more than helped autistic people and their families. My indifference is mainly due to not knowing much about the organization but I will look into it more now.
KingdomOfRats
Veteran
Joined: 31 Oct 2005
Age: 40
Gender: Female
Posts: 4,833
Location: f'ton,manchester UK
Whenever someone brings up the idea of a cure for a neurological aspect, you can't trust them. While there may be behavioral therapy, the individuals may not want to change who they are.
its not low functioning autism they focus on exactly,as low functioning autism is a huge spectrum that they have never been able to recognise-their main target is children with profound and low functioning autism,it makes the public go 'awwwwwwww,poor little kid' and brings in the public donations and charity funding.
autism speaks are a pro cure group,dont forget they are two ultra pro cure groups merged into one; DAN [defeat autism now] and AS themselves.
as someone who is pro choice of this silly cure concept, due to recognising the need for everyone having their own choice and own experiences of mine with own autism that affected quality of life so badly until being transfered to a new specialist autism residential centre four years ago,am not automaticaly biased against AS like many on WP are, but have got a lot of issues with them.
ontop of everything callista has said, the majority of their public donations is spent on cure research/projects, such as funding andrew wakefield [struck off in the UK] to get off his backside and spread more useless mercury=autism fearmongering info.
they are a national autism organisation but for years have portrayed it as a kids issue,with no support for adults-regardless of position on the spectrum,theyre like an autism version of PETA,they spread useless sht to put fear into people and extract money.
if they really want to help autistics instead of seeing us as a burden from which parents needant be struck with,they shoud be putting all that cure money towards autism awareness,developing specialist residential centres, schools, independant living flats,a specialist college to help autists at all autism and academic levels move into anything from lifeskills/independance to careers,carers respite centres where parents/carers can go have their own respite sessions from time to time,perhaps offer support/guidance/counciling/classes on manageing behavior and autism issues/benefits help etc.
this is exactly what UK based national autism and LD charities such as the NAS and mencap offer,both of them campaign for adults and get us involved as much as possible,dont see us as a problem,see us as people who all have the ability to develop to varying levels given the right support.
autism speaks spout a lot of BS at their rallies as well,have known aspies;such as 'autism hoya' be threatened at rallies because they were daring to give the correct information on ASD to potential donators.
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>severely autistic.
>>the residential autist; http://theresidentialautist.blogspot.co.uk
blogging from the view of an ex institutionalised autism/ID activist now in community care.
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