Some VERY concerning things about ASAN & Ari Ne’eman

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These came out last summer, and somehow I don’t think it’s made its way here yet. It makes me gravely concerned for the future of the Autism Rights Movement.

https://morenikego.com/memo-to-asan-2021/

https://my-open-letter.com/2021/06/20/a ... e-17-2021/

I was wondering what was behind this
ASAN’s Equity and Strategic Plans.

Not being there I can not tell if ASAN is a racist organization or a combination of some racist things happened and hypersensitivity.

It may be that their internal differences are too big to solve. The movement today is way bigger than ASAN and in many ways has outgrown them and is more diverse than them in the way Autism is looked at. For instance as far as I know they had no input in creating and bringing 'As We See It' to our screens. The time has come for more than one advocacy group.

No matter what happens they laid a lot of the groundwork for the positive things that you see posted in this section. I will always be indebted to them for that. What they are still good at is understanding the legislative process so I hope a reconstructed ASAN or new organization(s) find a use for that talent.

I don't have enough information to make any judgement about this. ASAN was the group that helped make positive changes.

I find that most activists tend to be bullies and will bully and silence people if they have a different opinion than they do. Plus they see things in black an d white and never see from another perspective and if you offer a different perspective, they will think of you as a bigot or an apologist.

A good example is an autistic child dies in their home, the parents were not able to care for the child due top their severe autism and their size so they blame the parents and pretend there is an agenda against autistic people because the parents were let of easily than being treated as cold blooded murderers. But if you dare to speak up and say the real issue is parents not being given the support and help they need to help care for their disabled kids who are too big for them to take care of them, you are seen as defending them and being an apologist. It's so easy to just blame than looking at the system and they can't face the fact that some disabled kids are truly hard to care for and how do you expect a 120 lb parent to care for a 200 lb child.

When I was a kid, it was easy for my school to just look at my behavior and blame me and punish me for it than looking at the cause of my behavior. This is exactly that the autism activists are doing. Want less autistic people dead in their homes, work on advocating for a better system for their caretakers so the autistic child gets the support they need. There is a difference between murdering your kid in cold blood (eg insurance or because you got too lazy caring for them) and murdering them because you snapped and were burned out.

Activists will make up imaginary problems or twist things and make up a conspiracy. I don't even talk to them anymore because I know they don't want to listen and they just want to argue and rant and insult people and most of them have moved to places like Twitter and Facebook where they can now just block people now if you don't agree with their narrative. They are no longer here.

My response was to this:

https://my-open-letter.com/2021/06/20/a ... e-17-2021/

This leads to a hive mind or group think mentality where people block out or shield themselves from other opinions doubling down becoming more fanatical against those that disagree with them.

This happens more these days for many current issues especially with the creation of social media where like minded people link up and end up creating their own universe for themselves, ending up with a distorted view of their own importance of their opinion and presence in the big wide world.

But there are always dissenters on every issue. If activists waited for 100% agreement every time, then nothing would get done.

As a parallel to your example of people defending parents who kill their autistic children, there are also even sometimes people in the autistic community who defend the Judge Rotenberg Centre with their electric shocks, saying that "oh, it was the last resort", "where else are they supposed to go?" etc. If that was a valid argument, then why is it that the Judge Rotenburg Centre is the only facility in the US that uses such methods the first place and why are there no similar facilities in other parts of the world? Surely, that means that there must other ways to treat kids with similar behaviour problems otherwise, why would most experts speak out against it and how do think they treat such kids in other countries that don't use those methods.

That's why forums are dying and social media is getting more popular. On reddit, you can add people to your ignore list and they can't message you and their responses won't show up in your inbox. Some forums have the ignore function where their posts are hidden but they can still see your posts.

I disagree, I think there would be more support for families of severely disabled kids. Why do you think the safe haven law passed or why it became illegal for men to hit their wives? Because women advocated. Want to protect newborns, allow the mom to abandon her child at a police station or leave her baby at the hospital after she gives birth and the people there will hand the kid over to the state and put the kid into a foster home and then wait for a couple to adopt the child. It's a matter of looking at the big picture and look for the cause to end it.

If my mom hadn't advocated for me and she just did everything people told her to do with me, I may have been in a group home today and have no kids of my own and no partner.

I don't think punishing parents for not being able to care for their child is going to stop other severely disabled kids from being neglected or locked in their rooms. Then I hear that treatments for the severely disabled in places for them are not goo except they are often confined to a room and nothing else is done. No shock treatments and stuff. Look at the UK what is being done to people who are severely autistic or disabled. If they are violent, they are kept in a straight jacket all the time or fed through a slot and it's like they are in a cage because even the staff don't want to be attacked by them. I often think that should be a very high pay job because they are risking their life caring for these people. I wonder why is it that not every severely disabled person becomes a ward of the state or is it because the families are too afraid because they don't want them in that position? Sky Walker's mom didn't want her son in a group home knowing he would be treated harshly due to his aggression but she ended up losing her own life and he ended up in a mental institution anyway. I do wonder why aren't they being drugged up like dementia patients are to keep them from being aggressive? But then again I have seen people fight against this too and the argument is "what are they supposed to do when they are violent then, let them get abused by them?"

My grandma also had severe dementia but she was never violent. When she was trying to take my baby one time, I got the caretakers when I didn't know what to do and they came and told her they needed help with something and she walked away and she totally forgot about my son. One of the caretakers winked at me and waved at me. I didn't attack my grandma because I knew she was harmless and there was no way she would go anywhere with my kid and she was just confused and my son's life was not in danger. I wouldn't say she was trying to kidnap my son because there was no motivation behind it. But I remember in the early stages of her dementia, she charged after me with her hands and was growling at me when I was 15 and she had me cornered. I was scared and I think I handled it well because not wanting to hurt her, I instead grabbed her wrists and gently pushed her back and fled the room and if course my grandpa was mad at me for laying my hands on her. I mean what was I supposed to do? Especially that I was a child and she was an adult. After that I never wanted to be around them again by myself. This is how delusional people are when an elderly gets abusive or violent and then blame the victim when they defend themselves. And I was 15. How does a 15 year old know how to handle an elderly? They don't have the common sense yet of an adult. And to this day I still don't know what else I was to do in that situation and I think I handled it pretty well that young. I didn't attack in self defense, I just grabbed her wrists and gently pushed her back and she didn't fall off her feet.

Reads like sour grapes and hot air to me.

You have totally misunderstood the point that I was making. I was not saying that activists shouldn't advocate for people, I was saying that they should but not wait for everyone within your movement to agree before taking action. This was in response to your statement that you thought autistic activists were bullies and often go to heads with people who disagree with them. The reason why I said this is that yes, people have their own opinions but that doesn't mean that everyone's opinion is equally right. There are some opinions that are just wrong on some issues. Also, I'm rather shocked that you actually thought that I was endorsing the Judge Rotenberg Centre . No, actually I'm totally against that kind of treatment disabled people. What I was trying to do is give that as an example of an opinion that was totally wrong and I said that the people who have that opinion are totally wrong.

Also, regarding that thing about parents not having the support to care for special needs child, obviously I'm not against them getting the support they need. However, do you really believe that not having the support they need is a good enough excuse to kill their child? I don't think so.

interesting, both the article and the member comments. thank you for the post.

In the specific case you mentioned, you do have a point that the parents are in a desperate situation.

But there have also been high-profile cases involving wealthy professionals, who could certainly afford hired help, either talking about murdering or actually murdering their autistic little children.

One example is Alison Singer, founder of the Autism Science Foundation. In the infamous Autism Speaks video "Autism Every Day," back in 2006, she spoke about how she had contemplated driving off a bridge with her daughter -- and she was filmed saying this in the presence of said daughter!

Then, four days after that video was released, a 3-year-old autistic girl named Katie McCarron was killed by her mother, Karen McCarron, who was a pathologist. Activists are concerned that the real-life murder may have been inspired, in part, by the Autism Speaks video.


There is certainly nothing wrong with advocating for a better system for their caretakers. Obviously, better systems are needed and should be advocated for.

However, autistic activists are very wary of the idea of saying things like "parents will kill their kids if they don't get services!" as a public political argument for said services. The problem with that argument is that the argument itself may inspire murders, as may have happened in the McCarron case. Even if the argument is not made with the intent of devaluing autistic children's lives, autistic activists fear that the likely impact is to encourage murder.

Anyhow, to address your main point:

Yes, too many activists are overly dogmatic, and overly heavy-handed with people who would otherwise be potential supporters.

Most likely this is due to just plain immaturity in many cases, I would guess. Another problem, I would hazard a guess, is lack of training in conflict-resolution skills. I consider the latter skills to be exceedingly important.

My take on the ASAN controversy:

As I see it, ASAN does make a lot of effort to be inclusive of autistic people in various marginalized demographics. However, given the type of organization ASAN is, this can be difficult to accomplish.

Problem: ASAN is an organization with a substantial budget and substantial funding. Hence, no matter how much they may try to equalize things amongst people in various different demographic categories, the people with the most de facto power are going to be the people with the most connections to (or at least the greatest ability to make a good impression on) ASAN's biggest sources of funding. And, naturally, those people are likely to be white, well-educated, from well-to-do-families, and generally privileged.

Also, it is intrinsically a challenge for well-educated people to accommodate people with even mild intellectual disabilities (ID). ASAN does try to accommodate people with ID by, among other things, using "plain language" (a U.S. federal government standard for official communication with the general public) on their website as much as possible. However, for a well-educated person with a big vocabulary and a habit of using that big vocabulary with one's intellectual peers, writing in "plain language" can be difficult and time-consuming.

A glaring example of this difficulty can be found, ironically, in the May 2021 Open Letter to ASAN from MGO and Cal M itself. Note the many "plain language summaries" scattered throughout. Apparently the authors couldn't just write the whole damned thing in plain language from start to finish. Hence the document itself seems to me to be an example of one of very things it is complaining about, namely less-than-100% accommodation of people with ID.

Accommodation of people with ID is certainly a worthy goal, and, in as many contexts as is reasonably possible, should be considered a basic human right. Nevertheless there are practical limits.

Attempts to communicate between people with big vocabularies and people with ID are intrinsically likely to be frustrating. This certainly is no excuse for ASAN to give up on such communication, given its aim of advocating the rights of autistic people generally, including those with ID. But it does mean that people on both sides of such communication will always need lots of patience -- and as many conflict-resolution skills as they are capable of learning.

Another big issue in this controversy has to do with intellectual property. Someone with the pen name of "Autistic Typing" claims to have been plagiarized in an ASAN publication. As far as I can tell, based on the controversy as I saw it unfold on Twitter, the relevant ASAN document is NOT lifted word-for-word from the "Autistic Typing" document, but just contains a lot of the same ideas. Also, it appears that many of those ideas weren't original with "Autistic Typing" either, but are commonplace ideas that have been around in the autistic rights movement for a long time.

EDIT: Admittedly I'm in no position to make a first-hand judgment about the validity of the accusations by "Autistic Typing." I have not seen the original document by "Autistic Typing," nor have I seen her specific allegations as to exactly which aspects of her document were plagiarized by ASAN. Alas, these things are on Facebook, and I'm boycotting Facebook.

IMO the autistic rights movement needs more documentation of its own history, so that we can all know better where our ideas come from and give credit where due. Certainly "Autistic Typing" deserves to be credited for whatever ideas are original with her.

I'll freely admit that I don't care much for Ari Ne'eman and can't fully support ASAN or the mainstream autism and disability rights movement in general. He has the motto "Nothing About Us Without Us," but expects the autistic community to let him and his group speak for us. He is a bit politically biased as well, and I am vastly ideologically different than he is, and I believe there is a gray area on every issue. When I paid attention to his site, I noticed some inconsistencies, like remaining silent when leftist politicians made ableist and offensive remarks but releasing press releases and demanding apologies whenever conservatives did the same (not that I fully support either, and it's their constitutional right to say things like that, which politicians left and right seem to forget constantly).

One central point of contention is the area of prenatal screening for autism, which is incredibly sensitive to me since I have a very narcissistic mother. I feel that if she had the option before I was born back in 1984, she would have exercised her "constitutional right" on me and has had a very dehumanizing, invalidating, and ableist attitude toward me all my life, even today. She constantly forgets that I am a grown adult. I can't move out for financial reasons (and I have some medical conditions like epilepsy and an arthritic right shoulder, but I am independent otherwise and am happy living in the area of the state where I live. However, ASAN doesn't seem to care about the issue. I believe there is a legal middle ground, and I would support commonsense policies like banning prenatal screening for conditions like that. I believe discrimination in the womb should be ended.

Not that I fully support Donald Trump or President Biden (and I won't vote for either in the forthcoming election), but I'm just sick of everyone like Ne'emen and most US politicians having "holier-than-thou" attitudes (like Trump, Biden, and their respective political parties). Even I've had negative experiences with other autistics online, especially within the furry fandom, which was a living hell for me. I believe that our condition is far from a get-out-of-jail-free card, and we should coexist with neurotypicals.

FYI Ne’eman has not been executive director of ASAN since 2016. He was followed by Julia Bascom. She retired at the end of last year. Avery Outlaw is the interim executive director.

I have seen nothing new about the allegations so what I wrote earlier still stands.