Confused about Autism Speaks as a hate group

[Au Naturel]

I think arguably my own biggest bone of contention with Autism Speaks is their alliance with the Judge Rotenberg Centre: Autistic Hoya — A blog by Lydia X. Z. Brown: An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

Word of warning, the following video has scenes that some may find disturbing:

That's a horrific video. There's no excuse for that. If he doesn't want to comply, just let him not comply. Do you know how the trial worked out? I want to see criminal charges. Imagine if that were a video of a police officer doing that to an arrestee!

 

[AGXStarseed]

That's a horrific video. There's no excuse for that. If he doesn't want to comply, just let him not comply. Do you know how the trial worked out? I want to see criminal charges. Imagine if that were a video of a police officer doing that to an arrestee!

Agreed. As for how it ended, I 'think' (haven't found anything to say otherwise) that Andre's mother and the JRC settled out of court.

 

[PinkPenguin29]

I honestly thought I was alone in despising Autism Speaks. I remember when I saw their commercials as a teenager and how they portrayed things really made me feel 'off'. I feel like they have mostly contributed to stigmas

 

[Booknerd515]

“Don't like those who are pagan, wiccan, or not religious”
I found this on your profile. Why should someone respect your lgbtq if you can’t respect people who are atheist or not religious?

I'm more comfortable with replying back to the second above post in a message, is that alright? I don't want the forum post to get too off topic.
I meant by saying that if someone can't respect someone's also atheist, religious, or any sort of religion as if they don't respect those groups quietly themselves that's ok. I don't like religious discrimination as I'm open minded on all sorts of beliefs. Most religious people I have talked to are fine with anyone who is pagan, wiccan, or not religious unless they're really extremely religious as my brother is atheist. I used to be atheist as well before switching to being part agnostic which surprised them to hear that as I used to be quite an atheist.

My brother is an atheist and I respect his views. I was an atheist myself for the majority of my life before being part agnostic. So I don't get bothered by people who are atheist and not religious since not everyone can be religious which is ok as I think people can be able believe in what they want to believe or not believe in something at all.

Also my depression is due to not being able to go to school as I am immunocompromised and my school is in-person only along with medical conditions I have. I grew up always not having an in real life friend apart from talking to my family. I am an extreme introvert and I accepted it at a young age as I didn't get online friends until when I was in the later half of high school.

 

[Kit]

Autism Speaks was more aimed at those and family affected with severe autism.

I often think why do we have one label for the whole entire spectrum. We don't label everyone on the schizophrenic spectrum as having schizophrenia. There have different labels for it so why not do the same with autism as well?

They did create social communication disorder but that isn't on the spectrum. There is dyspraxia, ADHD, sensory processing disorder, etc. All these could be placed on the spectrum and you wouldn't be autistic. But people might use the autism label anyway like we do with schizophrenia even if that isn't their diagnoses.

 

[Au Naturel]

Autism Speaks was more aimed at those and family affected with severe autism.

I often think why do we have one label for the whole entire spectrum. We don't label everyone on the schizophrenic spectrum as having schizophrenia. There have different labels for it so why not do the same with autism as well?

They did create social communication disorder but that isn't on the spectrum. There is dyspraxia, ADHD, sensory processing disorder, etc. All these could be placed on the spectrum and you wouldn't be autistic. But people might use the autism label anyway like we do with schizophrenia even if that isn't their diagnoses.

There used to be Asperger's. The WHO still considers it to be a useful differentiation from autsim. But DSM-V did away with it and tossed everyone into the autism spectrum disorder bucket, dividing the group into ASD-1, 2, or 3 depending on how severe. I can see reasons for expanding the "spectrum" diagnosis to as many people as possible but the way you handle different levels of disability are completely different. And as soon as a member of the NT public hears the word autism, their brain shuts off and thinks you are Rain Man. Or Sheldon Cooper if you are lucky. Easier for psych professionals to categorize you but more difficult for you to live.

 

[4gottenLoreKali]

There used to be Asperger's. The WHO still considers it to be a useful differentiation from autsim. But DSM-V did away with it and tossed everyone into the autism spectrum disorder bucket, dividing the group into ASD-1, 2, or 3 depending on how severe. I can see reasons for expanding the "spectrum" diagnosis to as many people as possible but the way you handle different levels of disability are completely different. And as soon as a member of the NT public hears the word autism, their brain shuts off and thinks you are Rain Man. Or Sheldon Cooper if you are lucky. Easier for psych professionals to categorize you but more difficult for you to live.

More or less my thoughts exactly.

In my experience, with few exceptions, "coming out" about any condition on the spectrum can basically change how a neurotypical views you in a matter of seconds. My perception is that when the overwhelming majority of the neurotypical public hears the word "autistic", they automatically think of someone like Chris-Chan. Your "mask" gets an instant scarlet letter. But if they hear Asperger's syndrome, you have a slightly better chance of salvaging your credibility to them... if you're lucky, their mental image might even be of Temple Grandin.

Look, I'm not a fan of pathologizing the autistic experience to begin with, but I've always been more comfortable identifying as an Aspie, in spite of the fact that designation officially "doesn't exist" anymore... it's what I was diagnosed with back in 5th grade after all.

I think this distinction is important not just from an optics point-of-view, but also because it means access to appropriate services. I want life skills training and for my SSDI status to remain intact, not to be confined in some kindergarten-type group home for the rest of my days.

 

[Magna]

More or less my thoughts exactly.

In my experience, with few exceptions, "coming out" about any condition on the spectrum can basically change how a neurotypical views you in a matter of seconds. My perception is that when the overwhelming majority of the neurotypical public hears the word "autistic", they automatically think of someone like Chris-Chan. Your "mask" gets an instant scarlet letter. But if they hear Asperger's syndrome, you have a slightly better chance of salvaging your credibility to them... if you're lucky, their mental image might even be of Temple Grandin.

Look, I'm not a fan of pathologizing the autistic experience to begin with, but I've always been more comfortable identifying as an Aspie, in spite of the fact that designation officially "doesn't exist" anymore... it's what I was diagnosed with back in 5th grade after all.

I think this distinction is important not just from an optics point-of-view, but also because it means access to appropriate services. I want life skills training and for my SSDI status to remain intact, not to be confined in some kindergarten-type group home for the rest of my days.

I don't think Temple Grandin was ever diagnosed with Asperger's. She wasn't diagnosed autistic until her forties, but she exhibited classic autism signs as a very young child because she became non-verbal and was so for quite awhile rather than developing an advanced ability to communicate early as is shown for children with Asperger's.

 

[4gottenLoreKali]

I don't think Temple Grandin was ever diagnosed with Asperger's. She wasn't diagnosed autistic until her forties, but she exhibited classic autism signs as a very young child because she became non-verbal and was so for quite awhile rather than developing an advanced ability to communicate early as is shown for children with Asperger's.

Then that shows my illiteracy on her life story, and I apologize for implying that she was Aspie. My point still stands that Temple Grandin is a very "model" example of someone on the spectrum, who is very visible to neurotypicals.

Your post reminds me a lot of my belief that functioning labels are not set in stone, and how level of functioning can change over the course of a person's life (or for me these days, even within a workweek).

When I was a kid, my autism presented so obviously, that my elementary school teachers thought I was never gonna make it to college, much less earn my BA in English cum laude. After I graduated high school, my family members thought I couldn't even be trusted becoming my own SSDI pay-ee because I'd just "blow it all on take-out, vinyl, and porno".

I guess my point is, expect the unexpected from the underestimated...

 

[HidinginPlainSight]

They tend to deal in grief for the parents at the expense of autistic children. Their economic model depends upon stigmatizing the autistic spectrum with a particular focus on children. The organizations goal is primarily financial.

I've had issues with everything I've seen from them, but I haven't looked at them for some time. I appreciate the struggles of parents with autistic children, but any organization that once compared autism to AIDS and cancer isn't one that I'm going to spend much time keeping up to date with.

 

[Magna]

If I could choose between my child having autism and not having autism I would 100% of the time choose not, it honestly sucks that the autism community has to be all sensitive about this. I hate my autism and life feels like a nightmare most of the time.
The struggle of being autistic isn't something that would just go away if people made an effort to adept to me, it would still be there and I would still hate it.

It honestly seems like no one has true empathy for autistic people, they either look at autism trough old stereotypes, are overtly enthusiastic about it(tony attwood) or blame suffering of people with autism entirely on the people around them(like you see on autism forums).

I respect your views that you have about your autism. I have been on several autism forums over the last few years and you're not alone. There have been others, albeit a relatively small number from what I've seen, that have expressed hatred toward their autism and others that have wished for a cure.

Hopefully if nothing else you can find support here to help you.

 

[Au Naturel]

If I could choose between my child having autism and not having autism I would 100% of the time choose not, it honestly sucks that the autism community has to be all sensitive about this. I hate my autism and life feels like a nightmare most of the time.
The struggle of being autistic isn't something that would just go away if people made an effort to adept to me, it would still be there and I would still hate it.

It honestly seems like no one has true empathy for autistic people, they either look at autism through old stereotypes, are overtly enthusiastic about it(Tony Attwood) or blame suffering of people with autism entirely on the people around them(like you see on autism forums).

If I could choose between me having autism and not having autism I would 100% of the time choose not. That's a no-brainer. I'd trade 30 points of IQ and 20 years of my life to be able to do it over without autism and I'm supposedly high functioning. Isolation, self-loathing, ridicule, bullying, financial hardship. Not to mention the risk of handing it off to my own children.

Maybe it would be better in an ideal world where the rules were different and there was a place I fit in. That world does not exist and isn't going to any time soon.

 

[Soleil]

I haven't been part of the autistic community for long, so I don't have much history with Autism Speaks. I had known that the autistic community generally doesn't like Autism Speaks, but since I wasn't a part of the community until recently, I never had any personal reason for disliking them. I've looked at their site recently, and I don't see much there to pick at, so while I understand that a lot of people haven't forgiven them for things like that awful "I am Autism" video, I never had that long-held animosity that other people have.

Still, if I had to choose, I'd go for groups like ASAN, which were founded by autistic people.