ASAN Statement on Genetic Research and Autism

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ASAN
This statement is too detailed to cut and paste parts of it. You should take the time to read it before reading my reaction.

I do agree with ASAN that because autism involves so many genes that chance for unintended consequences are high. Very important point.

While I agree with ASAN about the need for Autistic input in autism genetic research the recommendation for only autistics to do this research is both discriminatory and unrealistic. This nothing about us only with us is thinking is shortsighted. If implemented it will work against us. If it is immoral to have NT input about us because they are not us then it is immoral for us to have input about NT’s because we are not neurotypical we are taking ourselves out of input from the vast majority of the world. While NT’s often miss important things about us it is a truism that outside input is needed because one can be too close to situations to see it accurately. Also some people are so severely disabled to make these decisions at this time.

I urge this to be revised from only autistic involvement to as much autistic involvement as possible. Same concept with involvement in who goes into databases.

The statement was at many times was written in a condescending manner that seemed to me based on the assumption that the NT reader is both ignorant and a child.

Since Julia Bascom has taken the helm at ASAN it has become “woke”. This is seen in the woke code words present in the article. From a purely political standpoint that is bad as a lot of the country is having a backlash against “wokeness”. This includes many autistic people. This is really too bad because we need them. At this time ASAN is for all intents and purposes the only advocacy organization we have. ASAN is also important because they do point out how we have been greatly harmed by unfair to toxic to treatment because we are a small minority. The ableistic assumptions and othering are especially rampant when it comes to research.

I need to read the ASAN document more carefully, but, so far, I'm inclined to agree with you on this. [EDIT: See further comments in a subsequent post of mine, below.]


Depends who your target audience is.

I suspect that ASAN's primary target audience isn't average random people, and not even average random autistic people either. Rather, I would guess that their primary target audience is their most likely and most productive potential political allies, including (1) other disability rights activists and (2) other marginalized-minority rights activists more generally.

And, to communicate well with that audience, you need "wokeness" to the max.

Indeed, for that purpose, it can be argued that ASAN isn't "woke" enough. For example, ASAN occasionally gets flak for how it has dealt with some autistic people of color. (See this Wrong Planet thread.)

Why do I think ASAN's primary target audience is the above-mentioned political allies? One reason is that the autistic community itself is so under-organized as to be politically almost useless. Hence the only way ASAN can accomplish anything at all is via the afore-mentioned political alliances.

Even if the autistic community weren't so woefully under-organized, ASAN would still need these larger political alliances. For more about this matter, see:

- The "Ransom Notes" Affair: When the Neurodiversity Movement Came of Age by Joseph F. Kras, Disability Studies Quarterly, Vol 30, No 1 (2010)
- Victory! The End of the Ransom Notes Campaign by the Autistic Self Advocacy Network, December 19, 2007.

My one big disagreement here is that I wouldn't describe this episode as the ND movement "coming of age." I would describe it as more like the ND movement getting through some early childhood milestones -- and doing so out of the normal order, as is common among autistic people. Perhaps the best metaphor might be learning to communicate with the help of a facilitator -- complete with all-too-many challenges to the authenticity of the communication.

To come of age, the autistic rights movement and the larger ND movement would need to exist in the context of a MUCH larger, better-organized community/subculture.

The community organizations we need would not be, primarily, activist/advocacy groups. What we primarily need is more groups that can improve our lives in other, more direct ways. Examples:

- More support groups, in more locales.
- Hobby-oriented social groups.
- Career-oriented groups pertaining to specific categories of professions / occupations / jobs.
- SOME means (I'm not yet sure what this should be) of making it easier for more autistic people to find romantic partners.

We also need all these groups to be networked with each other, not just a bunch of isolated little silos. To that end, and also to help build all these groups in the first place, we also need:

- Leadership self-training groups, for leaders/facilitators and prospective leaders/facilitators of all the various kinds of groups.

With a better-organized autistic community, groups like ASAN could have a much bigger base of support than they have now.

Last edited by Mona Pereth on 04 Apr 2022, 1:40 am, edited 1 time in total.

The statement is written in what's officially known as plain language. ASAN has an official policy of publishing most of its info in plain language -- for the sake of making it accessible, not to "the NT reader," but to autistic people with mild-to-moderate intellectual disability. ASAN aims to be as inclusive as possible of intellectually disabled people. How well they succeed at this can be debated, but they do try.

The document doesn't actually say that only autistic people should do the research, though it does say that autistic people should be in charge. For example, the document says:


(Emphasis mine.)

It then goes on to say, about the autistic people within the "at least half of the people who make decisions":


(Note also that ASAN uses the term "autistic community" in a different sense than I do. To me, a "community" is an organized subculture. ASAN seems to be using the term "autistic community" to mean "all autistic people.")

Incidentally, the idea that people with a given disability should be in the majority of people in charge of making decisions about research on that disability is consistent with the United Nations Convention on the Rights of Persons with Disabilities, which most countries of the world have ratified. (The U.S.A. is one of the few countries who have not ratified.) This aspect of the CRPD is not actually followed in most of these countries, but it's a goal that the disability rights movement worldwide is pushing for, regarding all disabilities. See the separate thread UN Convention on the Rights of Persons with Disabilities.

If these allies in the disability rights movement take positions that alienate us politically we should not go lock step with them. If these allies are ok with these differences great, if not I would have to question if they are really our allies. It should be noted that it is likely a Republican congress is coming in next year, and they are the target audience. Many of them probably either has autistic family members or have friends that do.
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ASAN first and foremost should be about us. If the alienate a large segment of us what good are they?

There is a difference between avoiding jargon and using “plain language” and talking down to people. At first glance you thought they were talking down to people. First impressions are a big thing with NT’s. They think that they have the ability to know about about people fast through first impressions (Which has always been strange to me as usually my first impressions are wrong).

Last edited by ASPartOfMe on 04 Apr 2022, 9:53 am, edited 2 times in total.

Then, in response to my remarks about the importance of ASAN's political alliances, you wrote:


Breaking ranks with these allies might also be seen as a betrayal of basic principles, depending on precisely what you were referring to here. For example, what exactly were the "woke codewords" in the article that you objected to?


"Plain language" entails more than just avoiding jargon. "Plain language" is a specific official standard. See links to guidelines in one of my previous posts.


Actually, no, I didn't think this even at first glance -- because I happen to be familiar with ASAN's policy of using "plain language" and trying to be inclusive of people with intellectual disability, for as many things as possible.

(Not everything on ASAN's website is written that way, though. Writing in "plain language" is a difficult and time-consuming art. But, apparently, ASAN is now making a renewed effort to be more inclusive of intellectually disabled autistic people, because they recently got some flak for insufficient efforts in this regard.)

Last edited by Mona Pereth on 04 Apr 2022, 12:21 pm, edited 1 time in total.

ASAN are just several people renting a room / business space in NY.

They can bother themselves with ND nonsense all day long

The reality Genetic research will continue worldwide here to China because autism is a problem for those who see it as a problem.

Those that don’t need not bother themselves about it and will ultimately have to find other coping methods to deal this fact that don’t involve false natural differences narrative

ASAN is in Washington, DC, not New York.

Hopefully if/when enough organizations are created that can help us on various practical levels, and if/when accommodations for autistic people become more commonplace, then fewer of us will desire a total "cure" of autism per se, and then medical research can focus more specifically on those issues that actually cause the most suffering.

There are no "accommodations" that can substitute a life requiring 24/7 care or even for those of us slightly more functional, being unable to live independently, talk, form relationships, travel alone, work and be a fully independent functional human being.

What your referring to may mean something to the % of those at the upper end of the functioning tree, but autism is a spectrum of impairment and no fig leaf can cover up the issues faced by those most disabled.

For that reason autism will always be anchored to a disorder which will prompt genetic research, thinking otherwise is just wishfull thinking.

Logically the more they rebel for against a "cure" under the narrative that autism cannot be changed, the greater the emphasis will be placed upon prevention which is something ND advocates hate even more.

All sorts of political and societal factors affect the research budget for any given condition.

Have you ever wondered why there's a ton of money spent on autism research, but, apparently, MUCH less money spent on research on "intellectual disability" (or older synonyms thereof, such as "mental retardation") as a category?

I think the first thing to do when looking at anything ASAN does is to look at their definition of autism, which can be found at https://autisticadvocacy.org/about-asan/about-autism/.

Unlike the DSM-5, which states clearly the criteria for someone to be considered autistic, ASAN doesn't even have any criteria.

According to their website:

Yes, that's it. That's their definition. The rest of the page goes into things that might not apply to all autistics and can hardly be called definitive.

So when they state that "scientist who do autism research should listen to autistic people", that statement is actually meaningless since their definition of autism is so broad.

Since nearly 50% of autistic people have an IQ below average (see prev posts on this) and a third are ID I suspect they see a grey area between the two or the saying killing two birds with one stone comes to mind.

But I agree more does need to be spent on ID anyway.

Why, in scientific research, does autism get so much more attention than intellectual disability?

I suspect it's because intellectual disability is something that has been known to exist for a very long time. So, the existence of intellectual disability -- like blindness, deafness, and other well-known disabilities -- is pretty much taken for granted.

Furthermore, it also has long been known and accepted that these other disabilities have many different possible causes, hence a one-size-fits-all cure would likely be impossible.

So, while research on cures and treatments for assorted variants of these disabilities is ongoing, it's not a super-high priority. Providing accommodations for people with these disabilities, and generally improving their quality of life in whatever ways are feasible, is obviously the more urgent thing to do.

What makes autism different is that "autism" is a new concept. We happen to live in a society in which social abilities are at a much greater premium than they were in most previous, more traditional societies. In previous societies, autism per se wasn't disabling enough even to have a name, or to be noticed as a distinct disability. An autistic person who wasn't also intellectually disabled was just a weirdo, and was not given a psychiatric label, whereas an autistic person who was intellectually disabled was just "ret*d," or whatever word for it was fashionable at the time.

The newness of the idea of "autism" has been misinterpreted by some people as a sudden new "epidemic" of autism itself. IMO the explosion in funding for autism research was most likely driven by panic over the perceived "epidemic."

Not sure why you view so called “societal accommodations” and medical research as mutually exclusive in helping autistic people? In England we have a saying horses for courses or transferred to autism certain sectors do what they specialise in.

A special school for example may have specific lessons for autistic kids, a fast-food employer may hire autistic people who are capable of work

I’m not sure what sort of accommodations you would expect geneticists or other scientists in a drug company to take part in, they deal with matters of biology, i.e., the effect a drug or substance has on the human body.

I assume many anti cure ND would rather them waste their time in worthless surveys or side issues that have been done a thousand times that achieve nothing to help autistic people overcome their core symptoms, but there is no money in that and while there is a need that is not being fulfilled and it is in their business interests & in autistic peoples interests that need is fulfilled.

Otherwise known as problem / solution.

Also the word “autism” is just a 1940`s label rather than a medical explanation, its now understood the different brain disorders like ADHD cannot be easily separated from autism

In fact what is pure autism is there such a thing that can be isolated?

I think not, since I bet even the most functional of us suffer from some other brain condition like anxiety or lesser known hidden issues like facial blindness or memory problems.

ID and Autism are obviously linked due to the over representation of Autistic people that are ID, the approx. 1 in 3 figure is misleading since its taken in children not adults and does not include the CDC borderline range that is taken away in adulthood leading to nearly half of autistic adults being ID.

Sadly thats the brutal truth of why autism will always be anchored to disability, no matter how hard ND advocates try to whitewash reality.

The official stats for 8 year old autistic kids is:-

31% - Intellectually disabled IQ - 70 or below
25% - below average IQ - 71-85 (borderline range)

44% - average or above on IQ 86 & above

https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm