fandomsecrets | [ SECRET POST #2659 ]

[ SECRET POST #2659 ]

⌈ Secret Post #2659 ⌋

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Flat | Top-Level Comments Only

So recently I stumbled across the controversy and backlash against Autism Speaks in the form of a petition urging the White House to classify Autism Speaks as a hate group. And holy shit, I knew people didn't like them but I had no idea they were that bad! o.O Anyway, I got to poking at the issue, and it kind of made my reconsider so of my base assumptions about autism resources and such. However, my experience is very peripheral, so I was hoping to hear all your experiences, especially for those of you who are autistic or are very close to someone autistic.

Just my own little anecdata that isn't really necessary to the actual question, but may clear up where I'm coming from (feel free to skip it):

Like every other teenager, I spent high school convinced I had mild autism of some kind. And like the vast majority of them, I didn't have it, despite how much at least one of my parents probably wanted me to. But I remember, during high school, researching autism a lot, including Googling study advice for teens and college students with autism, tips on social interactions, career advice, etc. - and these helped me out tremendously. It was easy to find tips and ideas for people trying to help themselves, and I honestly credit that stuff with getting me through a very low point in high school.

A few years and a lot of lost bookmarks later, I repeat the search. But this time, it's much harder to find advice and information for autistic people to help themselves directly with the more day-to-day problems. The majority of the stuff I found was geared towards advocacy in schools and communities and such, and whatever was left was almost entirely devoted to family and educators of autistic people teaching such skills to autistic children. There was almost nothing directly geared towards autistic teenagers and adults. And advocacy is great! ...but I would think there would be more than that available?

At the time, I dismissed it as a combination of my own Google-fu suckitude, as well as what looked like an increasing mentality of "give autistic kids help when they are young and they won't need it when they're older" (not to mention a lot of those older self-help sites were connected to forums, and I knew that forums were suddenly and drastically decreasing in popularity at the time).

Then I saw that petition earlier in the weekend, so I repeated my search from the beginning of college...and I seem to run into the same problem. Now, there is a lot more advice for autistic people who want to self-advocate, but otherwise the same issue as last time remains. Anything that isn't geared towards advocacy is geared towards family and educators of autistic children, and helping them teach skills to autistic kids - there is very little that offers skill-building and advice directly to autistic teens and adults.

Now, as I mentioned, I'm not always great at Googling things, so maybe all that self-help resources for autistic people still is out there and I was just looking in the wrong place. (In which case, can someone please point me in that direction? I could really use that same brand of help I found so easily in high school, right now, my GPA is scaring me again). But in light of all this controversy, I am increasingly worried - is this not just me missing something? I feel like, given the attention autism as a disability gets, there should be a LOT of self-help resources, but most of what I find is offline (which at the moment means it's not the most readily accessible for me). Is autistic self-help just very web-unfriendly, but still out there on paper? Or does anyone else who looks for self-help advice for autistic people (i.e. study tips, social skills, career advice, etc.) have the same problem I did? What are your guys' experiences with this?

The thing about autism is that it's such a huge spectrum. There are some people with it who are high-functioning and others who bang their heads on the floor to self-stimulate and cannot take care of themselves. People who are against Autism speaks talk about how they don't like how the group is against eradicating or "curing" autism. They are in the high-functioning group. But why wouldn't you want to cure those who are in the low functioning group?

I actually saw someone say that Autism Speaks' goal of one day eradicating autism means they want to kill all autistic people. Uh...I could be wrong, but somehow I really, really doubt that's what they have in mind.

...and of course I'm not the anon you replied to, because they weren't anon. Sheesh. *Facepalms*

Maybe those people don't want to be "cured"? It's not a fucking disease.

It's a disorder that hinders social interaction.

I don't see what benefits not improving upon lack of social skills could provide.

but anon! then they wouldn't be a special snowflake anymore, they'd be just like everyone else! don't you understand, they're better than all of those neurotypicals because see the world in ways that normal people can't possibly comprehend. the neurotypicals just want to cure them because they're jealous.

yes, this is legit shit i have seen people say.

Technically, it is.

1. a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

In this case, the incorrectly functioning organ is your brain. The parts that should be lighting up in an MRI scan don't do so in a way the average brain would.

...but what about the ones that do?

No, it's not a disease. But do you really think the individuals who are so profoundly autistic that they cannot even take care of themselves are leading happy lives? REALLY?

I'm all for empowering those with disabilities (including myself), but those who scream they don't want any help for themselves aren't thinking about those who cannot function. At all.

Those are the ones who need help, and I think it's cruel to try and keep someone in a sub-standard of living due to ignorance of those on the higher functioning end of the spectrum.

More importantly, why wouldn't you want to cure anyone who WANTED to be cured? I really, really hate the attitude some people have towards disabilities and how they're not really disabilities, they're something that make you ~special~ and ~unique.~

Fuck that. My disability does not make me either one of those things, it's a pain in the ass and it affects large portions of my life and if I could fix it I would do so in half a second. It's not a gift, it's something that's physically fucking wrong with me and I want to punch everyone who buys into the whole "differently abled" bullshit. I'm not a mutant. I don't have awesome special powers, I just have a health problem that leaves me with constant pain and fatigue. There is nothing positive about it whatsoever.

Autism Speaks is terrible, regardless.

No one, regardless of symptoms, benefits from 'awareness' campaigns that increase stigma. No one benefits from AS's repeated refusals to speak up for autistic people and their families who face discrimination in schools and elsewhere. No one benefits from their sponsorship of the Judge Rotenberg Center, which punishes minor offenses with electric shocks and is being investigated for torture.

And honestly, no one is really benefitting from the degree to which they're focused on 'cure' (which judging on the direction research is going will probably look more like prenatal testing/prevention anyway). They talk a lot about lack of services, but only 3-4% of their budget goes to service provision. There are educational interventions and therapies and assistive technologies that already exist and that are research-proven to help- if they would just reallocate some of their funds from that area and from meaningless light-buildings-up-blue publicity stunts they could be helping so many people right now, but they seem content for that to be the responsibility of the small, local disability orgs.

Original anon- Now I think these are legitimate issues. Unfortunately, I haven't seen much criticism of these things because instead some people are just saying "Well, I'm autistic (high-functioning) and I don't need/want help!" which is ignoring people on the lower end of the spectrum.

Huh, and that's the majority of the criticism I've encountered.

I see it primarily from autistic advocates and parent advocates who are opposed to cure, sure, but most of them use (or need/want) help for themselves or their children, and they've typically been very intent on advocating in favor of services and treatments for people with all ranges of abilities. I've come across one or two people like you describe, but they're usually a lot younger than the other type and not that actively invested in their criticism.

Different circles, I suppose.

Well, I looked for tips such as you described and couldn't find a damn thing. :/

This is what I've found...

General adults with autism resources...
http://www.autism-help.org/adults-autism-aspergers.htm
http://hopingfor.com/adult-autism-10-tips-living-autistic-disorder
http://www.autismsocietycanada.ca/index.php?option=com_content&view=article&id=40&Itemid=72

Social skills...
http://www.autism.org.uk/socialskills
http://www.asha.org/publications/leader/2011/110118/social-communication-strategies-for-adolescents-with-autism.htm (this one is more scientific)
http://everydaylife.globalpost.com/activities-adolescents-autism-19227.html (not much here, but maybe it could be helpful?)
http://www.autismtoday.com/top-10-autism-strategies-for-encouraging-better-social-skills/

Career advice...
http://www.autism.com/advocacy_grandin_job
http://career-advice.monster.com/in-the-office/workplace-issues/succeeding-at-work-with-autism/article.aspx
http://ask.metafilter.com/253132/Career-advice-resources-for-autistic-adults-go
http://www.sciencedaily.com/releases/2011/10/111012113758.htm
http://www.cnn.com/2013/05/03/health/autism-chat-irpt/

Study skills...
http://www.iidc.indiana.edu/?pageId=437 (this is about teaching people with autism, but it might be adaptable?)
http://www.myaspergerschild.com/2013/02/70-tips-tricks-for-educating-students.html (again for teaching people with autism, but might be adaptable?)
http://autism.about.com/od/transitioncollegejobs/a/mjohnsontips.htm
http://teacch.com/educational-approaches/preparing-for-college-tips-for-students-with-hfa-aspergers-syndrome-new-gladys-williams-and-ann-palmer
https://www.youtube.com/watch?v=QjT4Tod9GQI (a video by someone who is autistic talking about study skills; I didn't actually watch it)
http://blogs.sage.edu/achieve/strategies/tips-for-students/strategies-for-students-with-autism-preparing-for-college-level-study-tip-4/ (this is one tip, there is this tag which might be useful... http://blogs.sage.edu/achieve/tag/college-for-student-with-autism/ )
http://www.wrongplanet.net/postt164876.html
http://nationalautismnetwork.com/blog/1/entry-176-college-bound-tips-and-resources-for-the-teenager-on-the-spectrum/ (The title looked interesting, but it required registration, which I wasn't willing to do for this)

I only skimmed those, so they might not be entirely useful, but maybe you could pick up some things? Also, I only researched the three areas (career, social, study) that you asked about, so if there is anything else, you could ask and I could try to find things? No guarantees, though, especially as I am anon and might forget to check back. Good luck!

Ooh, thank you! :)

There are literally no resources for adults with autism in my area. My family has suspected for a long time that I might have it, but I can't even get a proper diagnosis because no one will work with adults. It's incredibly frustrating.

I guess this is one of my concerns with the entire autism activist movement - it seems to focus on the people 'connected' to autistic people (friends, family, etc.) rather than autistics themselves. And that just bugs me in a weird way I can't explain right now, beyond the fact it seems like it would be condescending (but maybe it isn't for those actually involved?).

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[ SECRET POST #2659 ]

Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

NAYRT

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Re: Autism Activism? I think I'm missing something, here.

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Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.

Re: Autism Activism? I think I'm missing something, here.