Rock, Meet Hard Place: Autism Speaks

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So, my university is finally starting up a club for autism awareness, which I was really excited about! For clarification, I'm not on the spectrum myself, but my younger sister is and she's coming to my school next year, so really getting some activism, education, resources etc set up on campus is something that I have a vested interest in. There's only one problem. The club is Autism Speaks U. It's run by well-meaninged, but not so well-informed people...you know, the ones with elementary-school aged cousins on the spectrum. Enough to care, but not enough to know much. They reassured me that's just the name, and they're not all that closely affiliated, so I'm pretty sure I'm joining, if only to help educate from within, although I kind of doubt they'll allow me to contribute much in the way of input now that I told them I wasn't a gung-ho Autism Speaks supporter (which were literally the first words out of my mouth when I met them). That said, I'd like a more rounded perspective before I join. The conflict of interest I'm really worried about is if they suggest we fundraise for Autism Speaks, which I'm not so prone to want to do. I plan on suggesting a job-training group for people with autism on campus to give funds to, but considering Autism Speaks is in the name, I'm not sure that'll work. Thoughts? Comments? Opinions on Autism Speaks? (Good, Not too bad, Evil?) Thanks for the input!

1.autism speaks is accused of being an evil organization (accused)it is not an established fact that autism speaks is an evil organization.it is still a debatable issue.a lot of people love autism speaks.

2.i dont support autism speaks but i dont consider them to be evil just uninformed and maybe ignorant,but i think A.S is well intentioned.

3.a lot of people join autism speaks to argue against them as well.so handle this how you want and dont let people who think your evil for joining autism speaks bother you

join and try to influence people. if they are uninformed and misguided they need someone to inform and lead. do it nicely and tactfully, don't come on too strong. although i'm sure since you ain't autistic you can handle that part better than i would. make sure that you don't get involved in anything unethical. establish your boundaries and decide what constitutes an unethical practice, and if you see someone advocating something unethical try to persuade them otherwise, or back out of what they are doing. i hope you succeed in making your college a good place for your sister good luck.

Lead, follow, or get out of the way.

You seem perfect to Lead. In this sign you shall conquer, steal sign that says Autism Speaks U, and procede to run your own version of some university program.

Having a sister, you have an in with the under represented aspergirls.

While anyone can form a Chapter of something, look at ASAN, but avoid them. Autism Speaks is about the money, but you have an ethical problem, to do good, without exposing private medical conditions to the public.

The reason Autism Speaks exploits children, their parents can give away their right to sue, not so with University Students, and exposing someone's mental disability, subjects them to college boy games, stress, rape, murder, and they do have legal rights. A University that does not protect, is called, The Defendant.

Awareness, and "Being It", are very different.

I would not turn to an Awareness Group, or a Political Group, for guidence on how to fit in as a student, and have a good four years of education.

The goals differ, the first two want to show the horror of being you.

When we get to the actual problems of University life, for some like myself, pens do not work, or do so so slowly I cannot finish exams, nor could anyone read them. Being able to take exams with a keyboard, doing so in a quite place, are now called reasonable accomidations.

Autism Speaks does want everyone to raise money for them, as does ASAN, but do nothing about discussing the needs of autistic students with University Staff, the Office of Disability Rights, so it does not have to be done by each student in each class. There they would be forced to expose and explain why they have a disability over and over, where if the issue is dealt with once, they might get a quite room and keyboard test card.

Lead, you have a sister, you want her and all the other autistic to do well, Speak on her behalf, the non autistic do it all the time, and request the protections of The Americans With Disabilities Act.

It should be non public, for say you are allergic to peanuts. If you had to tell people all the time, you are telling others that one peanut powdered, put in your food, can kill you. That is not the kind of thing we want to be public knowledge.

Freshman girls are gamed, and autistics have meltdowns, and some would try it for s**ts and giggles. Half or more Freshmen drop the first symester, it is advised to not speak to anyone for the first year, much less expose a medical condition.

By the fact that you are discussing the Medical Condition of a family member directly with the University, all of the fund raisers are excluded. They lack status, you have it. Go for the benefits, and more than one person carries a card saying, I am Autistic, sometimes I have trouble speaking, I am not insane, or on drugs, please treat me with kindness and understanding, Thank You.

Form a secret autism group that admits nothing, a safe network based on mutual survival.

Your sister is a girl and intil recently no one noticed they were autistic. One should not have to expose a weakness publically to get a reasonable accomidation. The Politics of Autism is no place for an autistic person.

I would agree with most of the posters here. Follow where your true goal is, and while you're at it, be on your guard against people who will use you to their advantage. But hey, you're right -- they are after your money, and be careful, especially with those con artists at Autism Speaks. I could not believe they are trying to use you and your sister. That is quite very frustrating, in my opinion, but considering their notoriety in fraud and slandering the autistic community, I would not be surprised if they would approach you or anyone else looking for genuine support.

Still, follow what is morally and ethically right, and I bid you and your sister good luck in your future endeavours.

Respectfully submitted; she needs to learn to speak for herself. She needs to learn to be her own advocate. Speaking for her is just further sheltering her from the real world and making it that much worse when she finally encounters it. Don't throw her to the wolves, but don't be her surrogacy parent.

You want to help your sister - then one thing she will really need is a safe place to unwind - a safe place to go for help in facing the rest of the world. This can be best supplied by having a place for Autistic/Asperger's people to come together for meetings and gatherings where the Asper rules apply and any NT there must conform to the same rules -- (eye contact not required, extended periods of silence is OK, Verbal ques not body language a must to name a few). It may take awhile for some of them to get to the point of dropping the NT act as it has been so ingrained into us to hide our true nature that not all of us find it easy to drop the act.

If such a group gets started you may want to try going there and acting Asper as possible for as long as possible. Then as you run back to your "normal" world you may well have just glimpse of what your sister faces everyday of her life. I say just a glimpse because your sister has no where to run back to beyond empty rooms and these people will be much more forgiving of your "odd" behavior among them than general society is of us.

My real problem with organizations like Autism speaks is that they are all about making us more like you (to pretend to be NT better) - and nothing about understanding us or accepting us as we are. Autism Speaks is really a bunch of NTs that want to speak for us --- I have my own voice, thank you --- and demand solutions that we the ones on the spectrum have no real interest in. Even if you could manage a "cure" it will change who I am - and therefore by its nature must destroy me. However, I am just about 99.9% sure that anything that even remotely approaches a cure is nearly impossible within the technology of today. We are just pi**ing away all funds spent on such efforts. We need to move toward acceptance of our ways - we should be allowed to be who we are and what we are as we are.

First off, thanks for all the replies! Sorry my own reply is so late...I actually couldn't get on the website for a while over the summer (I think, in retrospect, that it was technical difficulties with the website, but considering I was in China at the time I thought it was being blocked by the Great Firewall of China and so just gave up on trying until I got back) and that, coupled with my forgetfulness and the fact that I thought I'd already replied to this meant that it took me forever to reply.

The safe place idea was a really good one. Unfortunately, I'm a senior this year taking 21 credits and doing a bunch of extracurriculars plus applying to grad school...I'm just stretched too thin to start up something new. I'll mention it to my sister, though and see if she'd like to do something like that herself. She already does have a couple of safe places to unwind and be accepted if she needs to retreat - my room, a club she's in, and with her friend she's made so I don't think that'll be an issue for her specifically although it would be a great thing for other people on campus.

I ended up not joining the club - I emailed back and forth with the president all summer and we just couldn't see eye to eye at all (and that's a bit of an understatement). Instead I joined another club on campus dedicated to eliminating the stigma from all mental illnesses (although even the words mental illness themselves are words I feel uncomfortable using, but they have the right idea). Part of the problem with the Autism Speaks U club that might have contributed to the club president's conflict with me is that I may also have come on too strong, despite trying not to, even via email...I may technically be an NT, but that definitely does not mean that I have good social skills. You guys seemed to assume that because I'm an NT that means I'm 'normal,' whatever that means. I can see where you'd get that idea from, but let's just say that out of all the NTs in the world, I'm probably the least typical. I'm one of those people that doesn't really fall under either the NT or the Aspie label...in short, I'm pretty weird and don't particularly fit in or understand the 'normal' world too well, but I can't give an explanation as to why. Since I'm not an Aspie, though, by default that means I'm an NT. I'm led to believe that many siblings of people on the spectrum have autistic traits and I guess I'm one of them. (Also, for that reason I think it would be only about as difficult, if not less so, to act Asper as it is regularly to act normal, although that was an interesting suggestion, MrPickles) Not that I think that should matter in this context...just goes to show you can't judge a person by their label, though, as I'm sure you're all well aware of.

My sister did end up running into some problems on campus, namely with her roommate, but instead of using a club to spread awareness I ended up using the website I was already making and kind of poured everything into it that I wish her roommate could understand. It was far more introvert friendly and less time consuming to make a website than a club, not to mention more accessible to others outside my own campus. Her roommate's kind of a lost cause in the understanding department (you have to be willing to at least make an effort in order to understand, and she's not willing), but I'm hoping someone else out there will at least benefit from this rather painful experience. I know it's not what any of you guys suggested, but I'm hoping it's a helpful third option, since I couldn't use options one or two. If you wanted to read it, you can check it out at autismandu.weebly.com - the friends section is the part I was essentially writing for her roommate. I pray that the girl actually reads it someday, but for now I'm too afraid to interact with her again and tell her about it, given what happened last time... Just please be kind if you choose to do so - I super appreciate feedback, contributions, etc, but only if it's constructive.

Anyways, thanks again! And sorry this turned into an essay - I'm kind of bad at being concise.