So why exactly do we hate Autism Speaks?

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As simple as that, I don't get it.

To tell the truth EC, I don't fully "get it" either.

I have read and considered what people with Autism/Aspergers have shared on this site and others. I understand the concerns regarding the eugenics angle (people with Autism don't want to be "cured" as this will be erasing them as human beings). I understand the concern regarding the lack of consultation with people with Autism (there are no people with autism on the Board of Directors with Autism Speaks or on staff from what I understand).

However, I found the website for Autism Speaks one of the only reliable sources of information regarding treatment and therapies for my son. I get so much advice and sales pitches from people who think that I am a lousy mother for not putting my son on a gluten/casian/soy free diet (my son does not have any digestive issues). I am told to use herbal supplements and new age interventions (energy work) and other things. The Autism Speaks website outlines the different theories and therapies/interventions and gives the straight goods on them (e.g. that the gluten free diet as no scientific evidence supporting it). It also offers links to other helpful sites and services.

Also, yesterday, I saw the video which everyone gets all upset about for the first time. I can understand that the voice over was a little heavy handed and could have been rewritten and redone in a more balanced way. However, some of the things that is mentioned is true. It is true that I have not had invitations to "play dates" by many of the other mums once they found out my son had autism (and my son is very, very high functioning). I know of devout Christians who were not able to attend Sunday services or do activities with families through their church because of unpredictable and (dare I say) disruptive behaviours. The truth is - for parents - these situations hurt. Also, as much as I hate to think about it - dealing with challenging behaviors DOES take its toll on marriages and relationships. All parents with children with Autism have admitted this (more so than parents of children without deveolopmental delays or atypical behaviours).

I don't think that Autism Speaks is perfect. I think that they need to include the voices of adults with Autism in their mission statement and decision making. However, I am not going to completely demonize them either.

I think this is where the problem is for people with Autism/Aspergers. We tend to be very black/white, hot/cold, right/wrong about things. It is important to disagree with the parts of a person or group without dismissing them completely. After all, we expect the same when people are dealing with us.

http://club166.blogspot.com/2009/09/whe ... isten.html

Ruchard, I have seen the video I simply don't get as upset about it to the degree that many people on WrongPlanet seem to be.

Speak to me like an Aspie please, BE CLEAR, use clear words. What [/i]exactly[i] is the problem that causes some people with Autism to demonize Autism Speaks?

Autism Speaks is an "organization" that portrays autism as a menacing, evil, unknown force: something that needs to be "fixed" or eradicated rather than something to be worked around, accepted, or made to come to terms with. They paint autism as a picture of shame, guilt and embarrassment, rather than acknowledging that people with both AS and autism have gifts, uniqueness and potential in life. They see their children as "stolen away" from them and defective rather than as complete human beings who have every right to exist as they do.

There are also no people with autism or AS taking any part in any of their planning committees, decisions or campaigns. It's ironic that they've named it Autism Speaks when virtually no autistics are speaking here: rather it's precisely the people who shouldn't be speaking for them: the people who mean well but are definitely not speaking for their welfare or best interests.

Although I do acknowledge the difficulties in raising children with autism and I sympathize with the parents involved, Autism Speaks distorts the concept of autism and instills shame upon those living with it, instead of offering genuine support and acceptance.

Even though Autism Speaks can be distant from what the actual feelings of the Austistic/Asperger's community are, they have given a lot of leverage towards the general public's knowledge of these disorders.
Since it seems that Autism Speaks only focuses on the worst instances of these disorders, it becomes a useful jumping point for me when its mentioned in a conversation-- a chance to prove to other people that those with Asperger's are actually quite smart and don't lack common sense.

Anneurism put this extremely well and she detailed the major problems many of us have with Autism Speaks. Add to that they are affiliated with pharmaceutical and "cure" companies, so all the money they rake in is used towards these industries. I'd like to see them cure brain wiring. That would be like curing mental retardation.

Another problem with Autism Speaks is that most of their money goes into research and looking for a "cure" rather than helping to improve the lives of the autistic people that are already here.

People have problems with them because they do misrperesent alot of factual information. They claimed autism was "skyrocketing" when anybody who can figure out the historical changes of the DSM and the fact that therapists have an easier time spotting high functioning forms of autism.
Secondly, they misrepresent most of the folks with autism spectrum disorder in the most extreme low functioning forms. Most fall into the atypical, high functioning and aspergers designations. The percentage in the low-functioning forms has remained basically unchanged since infantile autism was first discovered. This is a factual misrepresentation, they claim an "autism epidemic" when in fact there is no epidemic, just a better scientific understanding of ASDs and clearer classifications.

I am not going into the parents thing, but to be honest...we have problems with this for a reason. The organization treats autism like its mental retardation, its not, and they are misrepresenting what autism is. They are also not being clear that most people who have an ASD fall into a high functioning category, be it atypical austism, HFA, or AS, and misrepresent the severity. When you misrepresent people as stupid, who typically have average to high intelligence, those people are going to get rightfully upset. Alot of adults with autism want ANY autism organization to be run in a way similiar to the way blind and deaf organizations are run, by the people who are have it. We are intelligent adults, we deserve to run any disability rights organization that speaks "for us" including determining the agenda of that organization.

As far as I'm concerned the problem with Autism Speaks (not that I know a lot about them) is that they take a DDT approach to autism - meaning that they think it is a weed invading their pretty garden and it has to be eradicated at any cost. They don't care or notice what else gets killed in the process, just like when they used to spray DDT on crops in the fifties and sixties. They don't understand that everything in nature is interconnected, they just want to control and arrange it to suit their own wishes.

Incidentally, I was reading Silent Spring by Rachel Carson the other week and she mentions that DDT was shown to cause neurogenetic damage (correct word? I'm not a scientist - but it referred to the genetic heritage). Then a few hours later I was flicking through Newsweek or Time or some such crap and there was an article about a family where the father/grandfather was diagnosed with some disease to do with muscular degeneration, the daughter/mother had too early onset of menopause and the son/grandson had autism and the article was about how this had all been traced to the same genetic weakness. To me, the link to DDT and other chemicals used in the fifites when the father/grandfather was a kid is pretty obvious - but it will probably take a few decades before scientific medicine establishes it. (I'm good at seeing how things are connected in the spritual and natural worlds but I can't make sense of the social
world so for practical purposes my insights are pretty useless.)

I don't mean to say that this is the reason for all autism, I mean to say that there are as many kinds of autism as there are kinds of rashes, for example (some of which are to do with stress, some with allergic reactions, some with skin irritation, etc.). Autism can be to do with genes, allergy, brain damage, none of the above, or all of the above in some unique combination. Mainly, I think it's to do with the value of diverse brains in a species where the brain is the most powerful tool for survival. The behavioural problems in today's young, however, autistic or not, has a lot to do with toxicity.

It is pretty well established that some autistics respond well to a gluten/casein free diet, and other diets which relieve the digestive system of the excessive stress placed on it my the modern diet - but not all do. The more these issues are simplified and turned into soundbites or a "war on autism" by people like Autism Speaks, the less they're understood, and noone stands to gain anything from it, autistic or not.

Why I Hate Autism Speaks:

1) The name. Autism Speaks does not include people with autism on its board or in any decision making capacity. It has threatened autistic children with legal action because they made fun of it. The policy of Autism Speaks is to silence autistic people.

2) The emotional abuse. Autism Speaks takes the position that any expression of the humanity or dignity of people who have ASD threatens the families of people who have low-functioning children. Autism Speaks spreads the lie that it is okay to emotionally abuse us because we have no feelings and don't really notice. If we say, "We do have feelings," they say, "The fact that you can say you have feelings means you don't have autism."

3) The lack of support. Autism Speaks is entirely cure based. It spends less than 5% of its budget on services for people with ASD.

4) Poor use of resources. Autism Speaks also overpays its executives and manages its money badly.

Its precisely because you don't have Autism/Aspergers that you could never demonize Autism Speaks even if you do have a son with the condition CanadianRose. When a group attacks you and everything about you then i'm sure you would demonize them. When a group tries to justify your murder then you would get upset.

If you feel the love tonight, then you must know the time is right.

Why do we hate Autism Speaks, well they don't speak for for us, they only
speak for the parents, and want to cure or eradicate people who have are
on the spectrum. They see us and defective and not capable of speaking
for ourselves.

How about that, multiple times, they've sued autistic children? This makes it rather clear that they don't care.