Changing my mind about Autism Speaks

Post Reply New Topic

In the past years I've seen since it's origination opposition to Autism Speaks. For that reason alone I never supported Autism Speaks. Yet as I self-educated myself on logic based philosophy, psychology including old school Freud and Jung, sociology and some criminology my mind has really changed in how to concludes things. I am able to see one issue and find relating issues and am not quite as oblivious as I once was. With that said I no longer as a whole oppose Autism Speaks out of fear of not being liked and feel confident in being able to rationalize with most opposition though agree with some of it.

1. Autism Speaks does not speak for me. Yeah they should perhaps consider becoming a civil rights platform for those with autism.

2. Horrible autism view. Maybe they ought to be more subjective but I think they see the label as a label that hurts someone and they are doing the best they can to create in awareness an urgency to help people that really need help.

3. Autism speaks is discrimination. That's if you view autism as a identity and not as a label that is a disability. Most would not assume autism is a person but a disability people are helped with. Although the I Am Autism Video did make me feel terrible I think I will try and find a way to look past that as if they were trying to get rid of what hinders me from being as functioning and normal as that I choose.

I told a mother where I live that I would not publicly support Autism Speaks when she asked because self-advocates didn't like the organization and I would not be liked for supporting them. She was caught off guard by what I said and didn't realize people did not like the organization. In conclusion while I am not a member of Autism Speaks I do not hate them but at the same time I am a free thinker and will rationalize issues as they come up in my job. Should Autism Speaks want to fundraise with the new Autism Candles brand I am releasing made by those with autism and other developmental disabilities I would no longer decline them out of fear of reprisal from self-advocates.

Nathan Young

OK, so now you are fearful. Great. Nothing worse than a cowardly advocate. How are you supposed to lead people if you can't even stand up for what you believe in?

Leave it to a butt-head fan to start the name calling and atypical man ego pressures. I am not at all cowardly. It's not about my man ego or personal instinct as a whole. It's about protecting a potential so others can be helped to be included. On a personal level it's quite obvious I do not fear much of anything politically because I've spoken again most all sides and have my own opinion with regard to public relations. Professionally I have an obligation to remove as much of my personal bias as possible and to do what is best for the greatest possible outcome.

You have called me dude in the past and perhaps you are the dude. I am simply an observer interacting with the dudes at times. I am definitely not a dude but am not sure how I would refer to myself. I am a strategist, human rights and civil rights advocate and well an intellectual but do like the WWF at times.

My response intellectually should be to pound my chest like an ape and prove somehow I am not a coward. I think this itself may be a weakness. My final response is illusive in context.

Sometimes getting your way requires special constructive action which mutually obliges all concerned.

Autism Speaks spends more money on research to find a cure than on actually helping autistics.

They have the view that autism is something like a curse that comes in the night to change your normal child into a horrible autistic one.
What about just learning to accept your child as they are and getting to know them as their own person?

There is also the Autism Speaks video Autism Every Day where the mother talks about thinking about driving herself and her autistic daughter off a bridge and the only thing that stops her is her 'normal' child at home. When she says this, her child is right there next to her.

Also they seem to only choose the most affected children to show and don't seem to even understand that there is a range - not all children are affected to the extent they show. Also, what about those children when they are adults? There are plenty of cases of kids who were developmentally delayed and turned into adults who could function in society and express themselves.

The other thing I noticed in the video is one of the mothers talking about her child throwing a tantrum because she didn't want to go on a swing. Well, why were you trying to force her to go on the swing if she didn't want to? Autism Speaks doesn't encourage trying to understand how your child is different and work with them to give them what they want, they encourage complaining about your horrible life all because of your afflicted child. We need an organisation that actually wants to help these parents to better understand their kids and not force them to do things they don't want to do, just because they are the normal thing to do. Autism Speaks is not that organisation.

Part of marketing for a cure is to show the worst sides of things like desperation and for instance the concept of the label autism being the reason for it. Remember the initial reaction to autism is horrible as it's known as a disability. I remember my special education English teacher in an IEP meeting reacting in a frightening way about they thinking I had autism which my mom already knew and then immediately apologizing for my self-esteem. The school psychologist was not happy with the teacher but I myself felt maybe they understand now and will stop putting me in these crazy environments. You see the Autism Speaks videos are not intended for those with autism to see but it is confussing when they call their organization a label speaking.

How about you and other post one autism speaks video at a time and I will write a balanced review concerning each one in the perspectives of parents, public and those with autism.

You must admit though that some of what Autism Speaks has said in the past is simply not accurate. They previously catered to the anti-vaccine crowd even though Wakefield's anti-vaccine theory was known to be nonsense by the rest of the scientific community. They dropped support for the anti-vaccine theory when Wakefield's study was revealed to be a fraud. Last time I checked their website, they still call autism a "global health crisis". How can it be a "global health crisis" if there is no real evidence that autism is any more common than it was before?

Also, that "I am autism" video seemed to focus more on the parents and care-givers of those with autism than the autistics themselves. They now say that they want to improve the quality of life of those with autism, but if that were true at the time they made the "I am autism" video, then you'd think it would focus on people living with autism. Not how terrible life is for the parents of children living with autism.

Anyway, that's my criticism of Autism Speaks?

At least I have balls. If I want to go out and do something, I just go friggin do it. Instead of engaging in self-righteous Internet posts all the time, I'd suggest you do the same. As for the name calling, I'm not sure where I called you a name. You said you were fearful, and I concluded that meant you were cowardly, which isn't completely unfair to suggest.

Now sure, in order to get your way, sometimes it's best to work well with others. This is certainly the case here. If you, and all the other advocates are in it together, then you should be working together. But saying that you are changing your mind out of fear that people won't like you...I think there are better reasons to change your mind than other people suggesting what to think. You can work with someone without actually agreeing with them, right? Or I hope so anyway.

People don't always like the things I say, but people usually respect what I have to say, because I don't apologize for believing what I do, and I can usually explain what I mean when I say this or that. It's better to be respected than liked, especially if you are trying to make a difference in an advocating type of field.

Now, maybe I misinterpreted what you mean by "fear" but hopefully, you mean that you are no longer afraid of Autism Speaks. Hopefully you mean including them if overall it's best for the current cause, because it's all about the cause, isn't it? I personally don't like Autism Speaks, but if they were completely worthless, they would no longer exist.

Autism is a global health crises for reasons of quality of life and perhaps they are insistent on this because parents are so fearful of what will happen after they die from old age. I don't know if autism is more then before all I knew growing up was being overwhelmed and not if others were like me. As for vaccines I only found out about that recently and perhaps trusting a scientist is a good thing sometimes and not. I don't know much about the topic other then vaccine people calling me names and a scam then they were called a scam coincidently.

I think parents and advocacy groups are afraid of what some higher functioning people with autism will say. What you and others say has consequences and I think they are really afraid so to protect people with more needs. I am kind of fearful of the perspective autism is this great gift and difference because well I know when growing up and now that's not the case but I cannot imagine my being much different. I think the compromise is culturally we can embrace people that have difficulty and celebrate them as human beings and include them out of respect. The politics over the label seem to be mutually destructive to differing objectives.

Please post some videos and I will provide objective insight and as unbiased reasonings as possible.

Mr. Dude you know how to play the man ego bit well and it's kind of like you expect other ego's to go along with it as a mechanism of superiority in preservation. I know the truth and what I do with that truth is find variant perspectives. I have always been ethically stuck on the Autism Speaks issue and that is in part why I took my advocacy offline and have succeeded so very well. I do things without fear and dare myself to accomplish what I see fit and have done very well. I want to show this example to prove to others they can as well.

I have never been afraid of Autism Speaks. I've been however very worried with the social civil war in the autism community that effects innocent life. Autism Speaks like the ASA are large organization that if their political compromised it could indirectly harm others in need. Although government seems to be the backbone of the social service needs the advancements of social progress are performed by these organizations and others. I am hesitant of major conflict and especially conflict of uncertain rationality in premise and false interpretations to get attention. Trust is an important thing to me and just because something may look cool, makes me feel empowered and promises me power does not mean I trust it.

ci - you're supporting an organisation that thinks it's ok for a mother to say that she was thinking about driving herself and her autistic daughter off a bridge and the only thing that stopped her was her 'normal' child at home.

- Don't you think that might encourage other parents to think it's ok to think about killing their autistic children?

You're also supporting an organisation that puts more money into research for a cure than actually helping autistics and their families.
Isn't making autistic people's lives better far more important than trying to stop more autistic people being born?

Isn't it also more important to portray an accurate view of autism - which means showing autistics across the ranges, not just the most affected ones? If they are gaining donations by misleading people into thinking everyone who has autism is affected severely, that is unethical and also gives the public an incorrect view of autism.

I've learned not to take anything at face value in politics. If you post videos I think you will understand my analysis and should not be afraid of people finding reason with it. The idea of killing perceived defective children goes back to the stone age. The Greeks and romans used to throw infants and young children off of cliffs as a way to purify the population. In this day and age the persons statements were well judged accordingly but is a different animal then the Roman and Greek issue. I believe I recall social services investigating the mother right? Ultimately she I believe was mentally distraught and wanted attention by saying those things so that she could receive government funded services like respite.

Yes it is unethical but as I've said before the rationality of parents and autism especially like the English teacher I had who is a mom is that of emotional irrationality. While a lie is a lie I think they are desperate for help in premise but it does not make it right. I believe Autism Speaks will be changing and has had some changes already.

The opposition to the organization seems to be related mostly to the concern over the development of a prenatal test and the marketing approach they have taken in the past. I have also heard some have issues with the level of pay for the people running the organization.

It doesn't seem like their existence or non-existence is likely to have much effect on the potential development of a prenatal test. Some are interested in it, and they could fund the research with an alternate avenue if "Autism Speaks" did not exist. Given the negative feedback over the marketing approach, it stands to reason they will adapt; otherwise they could lose some funding. As far as substantial pay for the officials running the organization, it is par for the course for an organization of this size and perhaps lower than some others.

To the present date would Autistic people be better off without the efforts of Autism Speaks? Is everything that they do bad? I'm I missing any other negative issues related to the organization? What are the things they have done that have been positive for the condition of Autism? Their website indicates that their efforts go above and beyond the negative issues I have heard of. Given all of the information available, do the cons outweigh the pros. If they disappear tomorrow would it slow a cure or a prenatal test?

Last edited by aghogday on 20 Jan 2011, 10:36 pm, edited 1 time in total.

I cannot determine this. I perceive what is as that which is most capable should it direct it's will accordingly to enhance lives. Ultimately I do not depend on any organization as that would be a fundamental risk. Organizations like Autism Speaks and ASAN have to me in their behavior shown public relations risks that could compromise the innocent. ASAN to me is just as bad as Autism Speaks in risk while ASA is the most stable and has no clear risk. It would be wise if both ASAN and Autism Speaks to slightly reform and focus on common goals. ASAN to me is more of a risk and I am prepared to politically remove the risk should it get any worse whilst Autism Speaks is big enough to me that should it change would be a great benefactor whereas ASAN is compromised in more complicated ways and much smaller.

I am prepared to authorize my team to honor my rights by means of verification to macro media outlets should things get any worse with ASAN and related organizations.

ci - what are your problems with ASAN exactly?

I've only heard good things about them, like the fact that they went to the UN about the Judge Rotenberg Centre which uses electric shock and withholding food as some of its treatments for the children and young adults it treats, including autistics.

6 children have died there so far and when you read about their deaths, they are all caused by negligence - like the child who repeatedly tried to get the staff's attention, but was punished for it instead of the staff noticing that they needed medical attention.

Autism Speaks however, at one stage actually spoke out in support of The Judge Rotenberg Centre and was not involved in the call for the UN to investigate the centre.

From what I know, I just don't think the two organisations are equal at all. ASAN cares about autistics. Autism Speaks only cares about parents.

Nothing as a whole is wrong with ASAN but ASAN uses political aggression to assure anyone speaking against them is suspect. I mean to say if I disagree with ASAN in part does that mean I am pro-abuse, anti-equality and anti-people with autism representation even though I am a person with autism or a person described as of autism. I represent myself but "THE Autism Self advocacy Network" implies in generic name and concept much like Autism Speaks as if people with it are allowed to speak and that a diversity of opinion is allowed when it is not. There approaches like other self-advocates that get the most attention have always been confrontational and maliciously interpreting things on a power trip.

To me they are politically immature college students effecting me in my life and they are filled full of anger and any half truth that they can find insults to makes self-advocacy in general look bad. The media needs to see self-advocacy as not a single corporation. Also they have gone and made selective abortion an issue which compromises in their representation of individuals with autism other issues. You can't guilt the American public like that into helping with such adversity and make others into bigots when they actually care.

ASAN is Republican based model somewhat.
Autism Speaks is more like a Democrat base model somewhat.

Both of these organization have rhetoric that drives me crazy because of false fact. I am so sick of the propaganda, lies and political gains made by pressure based manipulation. Both organizations need reform. I want to get self-advocacy beyond these influences in social media representation and empower individuals to have a voice without indoctrination of political philosophies or limitations to that self-representation and empowerment.

My agenda is to not be anyones leader but see to it that everyone can be a leader. Also the politics of feeling insulted to get your way is running out of steam. It's so very immature, unprofessional and disrespectful to people that love people with autism even many people who don't know a person with autism and still supports programs and services.

Nathan, do you believe that people aren't marginalized or dismissed or treated badly for being autistic? Do you know much about Michelle Dawson? Or the woman who's studying to teach, who reported abuse of an autistic child, whose report was itself characterized as being from someone on the spectrum and therefor not trustworthy? Or that autistic children are murdered and their parents are basically forgiven in the press for how hard they had it trying to raise a disabled child? Or the fact that the Judge Rotenberg Center has simply not been closed down after all these years, because people basically don't care that this stuff happens to developmentally disabled (including autistic) children?