I made the mistake of posting a comment on this page stating that though a cure may be considered politically incorrect, it was a nice thought and that if people did not want a cure for autism they should not get one.
I then copied and pasted this photo on my own facebook page with a similar comment. I was shocked to find that at least one of these neurodiversity people reported this to facebook and had my post deleted.
I was so shocked and angry over this injustice that I posted that I was seriously considering deleting my account. One individual commented that some neurodiversity people had started a page entitled "Mothers who hate their autistic children" which was apparently one of the well-known attempts by some neurodiversity activists to bring back the bettelheim era. They would say things like some mothers wanted to cure their autistic children because they hate them. They filed a report with Facebook who responded that this did not rise to their definition of hate speech and did not delete the page. But apparently if someone posts a polite comment and photo like this, this constitutes hate speech from Facebook's point of view.
I wrote a post stating that I was considering deleting my account I was so angry over this, though some people urged me to stay on. I requested an account delete but it usually takes two weeks or more to go through and you can cancel before deleting your account. I decided there might be an alternative explanation for this like a DMCA violation of posting this photo, so I cancelled the delete and told people I would stay for the time being.
I thought this originally because the photo was taken out of the original post I got it from, but I just think the page owner found it so offensive she coudldn't stand looking at it. So, it seems unlikely there is an explanation other than the fact facebook engages in censorship of anti-neurodiversity pro-cure posts even if they are polite.
I've now decided on a compromise. Instead of deleting my facebook account I deactivated it, meaning that I put it in abeyance for an indefinite period of time but I can always go back and put it back on if I want. So this way, I won't lose data if I want to go back in and get some old photos or some other data I have on my FB page. I can also restore the page if I change my mind.
There is no point in participating in facebook if they are a pro neurodiversity organization who engages in this type of censorship. Now the ND's have succeeded in getting autism speaks to abandon the search for a cure and the federal government to abandon combating autism, they've now suceeded in getting facebook to delete any pro-cure posts that they report to them. At least they were not successful in getting my newsweek profile killed.
So I guess if anyone gives a shit about me they can see what I post on twitter, which does not seem to engage in the petty censorship that facebook does.
I enjoyed logging on to facebook and looking at some people's pages and chatting with people and all the other perks involved in being on facebook. I guess the ND's can take some satisfaction in that they've delivered another blow to me and unfettered speech.
14 comments:
Roger, my facebook page has been deactivated, I could restore it by signing back in and i might do so sometime, if something is wrong and i cant not end of world.
Interesting to hear about that. Did not know he had a child on the spectrum. Some of the people in that group were claiming the shirt was photoshoped on him, I guess that was either wishful thinking or dishonesty
Jonathan your voice is an important one in online world autism discussions. It is a voice that I appreciate. As Roger said it is your decision but I look forward to when you re-activate your FB presence. Harold L Doherty, Fredericton, NB, Canada.
thanks for kind words, harold. I will reactivate likely at some point, but trying to take an extended break for a while. I'm still on blogger and on twitter if you want to read my thoughts.
Jonathan - I admire your courage in speaking out, and I frequently read your blog. I am the mother of a grown son who is profoundly affected by autism. He will require lifelong care and support. I am in favor of treatment, therapy, and cure.
I would certainly not force a cure on anyone - those who find their autism not a disability but a difference can exercise that choice. But I do think a cure should be available for those who want one, much as cochlear implants are available for deaf individuals who want to hear.
It has made me sad and angry to see the way the neurodiversity movement has co-opted almost every major autism organization and research for a cure seems to be have been sidelined.
Anonymous 10:49. thanks for your comment and reading my blog. I agree with everything you've said and my heart goes out to you and your son. Unfortunately, even if it weren't for all the terrible politics that have prevailed in the autism world today, a cure is not likely to be available in the forseeable future. But the whole political situation nowadays indeed makes it worse.
Hello Jonathan, If autism by any chance is the result of environmental influences like air pollution and diet, it is very likely the reversal of the autism epidemic will not be able to happen in any time frame that matters without the intervention of technology we may or may not yet have. Yes, the political climate regarding autism seems apocalyptic because as everything goes down (the autism epidemic worsens) all people are doing is just celebrating more and more as the ship continues to keep sinking. We must also realize that we don’t just have an autism epidemic, we have an epidemic of the things that are causing the autism epidemic, we can’t have one without the other. Whether it be pollution or diet or the moon getting further and further from the sun for all we know, one thing is for certain, rationally and realistically speaking, we don’t just have an autism epidemic, we have an epidemic of the things and influences that are causing autism. Many have tried to identify what this influence of epic proportions is, some have suggested it might be vaccines, personally I am not convinced that the autism epidemic revolves entirely on vaccines, I think there is more to the story or incident or issue.
I am for people choosing a cure if that is what they desire. My problem is I do not think that is how it would actually work. While the hypothetical autism cure will probably not be legally required I think the combination of financial and peer pressure will create a situation where the cure might as well be legally required. I am thinking of if you want to be employed in most companies you will need to take the cure and that insurance will be unavailable or prohibitively expensive for those who refused the cure. Then there would be the issue where there was no personal choice because their parents made their choice for them. Will they have an option to revert the cure as an adult or for that matter will all adults have a choice to become autistic? I doubt it. I doubt the thought of researching a choice to become autistic will even be a thought. In a post-cure world while there would be people who would choose not to take the cure because there are always contrarians the autistic population would be much less. Autistics would be thought of as morbid curiosities. Society would not be willing to give benefits, accommodations, insurance, and jobs to people who chose to be that way.
aspie-aut 1957: What you are talking about is very hypothetical as there is no cure to chose from. If autism is as benign as the neurodiversity movement claimed and acceptance and accommodations would solve everything as they say, there would be no peer pressure to take it. Certainly parents would have a right to choose a cure for their minor or conserved adult children as they are the ones who have to take care of the child or impaired adult who can't speak for themselves, just as they have a right to send them away to boarding school or cure their diabetes, cleft palate, etc. That is a given unless you want to give children the right to refuse cure for all medical conditions until they reach age of majority and end conservatorships.
I don't see how it would affect insurance rates if autistics did not get other illnesses that would make insurance go up.
Society is not willing to give lots of accommodations anyhow, and if the person behaves badly on the job that is not a legal accommodation under the ADA, ND's to the contrary. Autistic people would get jobs if they had a marketable skill or worked in a job with a minium of social interaction such as cross country truck driver or medical transcription which I worked in myself for some years.
Jonathan: Workplace and social decisions are often not totally made on skills/merit. A lot has to do with networking skills and do I want to work or will others be able to work with the prospect. The trend the last few decades is more emphasis on social skills. I am in your age range and when I started out in the workplace I was often told something along the lines of you and your boss can hate each other but just keep your relationship professional and “this is a place of business not a social club”. Nowadays even ads for computer programmers emphases people skills. Cubicles are giving way to open offices.
In my hypothetical post cure world the choice to remain autistic will be viewed at best incredibly stupid, morally reprehensible or evidence of a factitious disorder. Insuring and hiring such people would be viewed as very high risk. People would not stand for paying taxes or higher insurance premiums for people who made a choice. While the media as you document make it seem there is an ND trend I feel this is overrated. If you go by the mainstream media no republican/conservative never mind Trump would ever win. People dislike and fear people that behave not as expected, that is basic human nature. For the same reasons parents who do not give their children the cure would be ostracized not unlike the “refrigerator mothers” of a half century ago.
Having good social skills is necessary to being employed and staying employed, even if you have a job working at home from the internet, there are people you have to speak to sometimes, but this keeps it to a minimum. That was how I worked for my last nine years or so of employment. You can hate the boss, but he/she is still the boss and you have to work with them and be pleasant even if you don't like it.
Yes, most people, particularly those who experienced severe autism as I had as a toddler, would be stupified by the choice of someone not to cure themselves or their kids. The media, the government, and even now autism speaks have embraced ND, so I don't feel it's overrated. If the person, developmentally disabled or not, can't do the job or get along with people, they are not going to be hired. If they have a high demand skill, they won't have trouble working. Jobs, such as sales, requiring high levels of social skills and interactions are probably not best for autistic people in most cases.
Jonathan :It is not what they say it is what they do. People do not say “nigger” in public much anymore and there are many popular black entertainers but “driving while black” and other forms of descrimination is very real. If you are black you are at a disadvantage. It does not mean you can not succeed with the correct work and social skills but you probably need to have more of those skills and work harder to get that.
Yes Neurotribes wins awards and The Good Doctor is extremely popularl. Does it mean anything in the real world? Autism genetics research continues apace and CRISPER-CAS 9 gene editing technology has a large “consumer eugenics” potential. ABA is touted as the gold standard evidence based treatment. ABA is primarly used on autistic children. If it is so wonderful why is it not widely used for all behavoiral issues? It is in my humble opinion the reason is autistic behavoirs are widely not liked. Enforced politically correct language and diversity does not equal acceptance. The other reason is that a genetic cure has proven to be very complicated. ABA is designed to rewire the brain. Our brains wires itself most in the first two years of life. If a way can be found to intercept or deflect the brain from wiring itself autistic early on you could cure autism while calling it a treatment. This is why there is so much emphasis on research to diagnose Autistics in infancy.
the analogy between autism and being black or a homosexual is one of the oldest neurodiversity parlor tricks in the book, used ad nauseum, to absurd to even comment on though I've done it before multiple times in this blog and elsewhere.
Yes, there's still research in genetics, because autism is in part (though not 100%) a genetic phenomena and there are people who get grants doing it, but thanks to ND genetic research may get less funding.
I'd like to think of CRISPR and other genetic research as something that may help an autistic person or help him not be autistic rather than eugenics. No one is out to get autistic people, but just want to help an infant live a normal life if that is possible, still not possible. A genetic cure will be complicated most likely because autism is not just one condition but a variety of conditions caused by a multitude of genes, environmental factors, or a combination of both.
ABA is a touted treatment in spite of its lack of published adult outcomes and questionable efficacy because nothing better is out there and people are desperate to help their autistic kids. ABA is called behavior modification in other venues,is used to treat weight loss, smoking cessation and a variety of other means besides autism.
Jonathan: I do not think there are a bunch of people sitting in a room conspiring to get rid of autism or autistic people. It is mostly people thinking they are doing the right thing because most do view Autism/Autistic traits as bad. And I think that would carry over to those who choose to refuse a cure in a hypothetical post cure world.
Of course being black is not the same as being autistic or LBGTQ for the matter. But the analogy fits in the case of trying to create acceptance or sympathy by enforcing politically correct language and diversity.
There are little realistic alternatives to ABA because those treatments have monopolized the behavioral treatment of autistic children. As with any monopoly, they hinder competition. As you pointed out researchers need money and they often want prestige. For non-ABA research that is a lot harder to get. Parents are often left with a going with the "gold standard" ABA or paying out of pocket and uprooting their families to find a high risk unproven "alternative" treatment. Uprooting their family will be a big set back for change-averse autistic kids. If they do not have the resources to find an alternative treatment often their only non-ABA option is homeschooling.
I guess I am more pessimistic and cynical about people then you and have seen too many cases of "the road to hell is paved with intentions" and "money changes everything" situations.
This photo is 100% photoshopped, and I can say this with 100% certainty . I was on Instagram and came upon this exact same photo yet Vin Diesel was "wearing" another pro-Autism TShirt that says "Forget Superman, my hero has Autism."
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