Combating stigma in autism research

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https://www.frontiersin.org/articles/10 ... uto-dlvrit

This is a difficult question to answer some main points:-

1. Nearly half of autistic people and at minimum 30% are too disabled to engage in anything so who talks for them and do those representing know their needs or what they want rather than family members?

2. Autism is an umbrella condition rather than a single condition like Schizophrenia for example so is it fair those with mild symptoms with very different objectives advocates for those who may have more severe symptoms and an entirely different disorder ?

3. Some people don’t want a cure or any treatments for autism so why include those who just want to sabotage progress? It’s like including the Catholic Church in abortion the two parties have opposite objectives.?

4 since autistic people want different things how do you choose those who are supposed to represent you?

The whole idea is flawed sadly certainly listen to autistic people but I don’t think we can treat autism like any other condition the community is just too divided for a single voice

Far from difficult points.

Do those 30% of said autistics' caretakers had to encroach the majority of decisions, though?
Because that's been the case for years.

Not to mention the outside parties -- neurotypical professionals without personal involvement with any autistics.


It is an umbrella condition and it already did categorized as such.

It's this change from the DSM-V that caused the confusion.
Obviously, 'aspies' didn't do it.


See my answer in #2.


Oh, it's more than just the autism itself.
There are other facets of an individual that needs to be represented; particularly differences in demographics, which also affects how people are being treated individually abd collectively.


Tell those who wrote the DSM to take subcategorization to the next level -- if bringing it back isn't doable.

Or make the progress faster -- no one so far; neither the so called 'HFAs' and caretakers of so called 'LFAs' are actively objecting to subcategorization past the HFA vs LFA/levels of severity/supports debates.
Why not go there?

Who keeps using the phrase "Nothing about us without us"? I may be wrong but i can remember no reference from those looking for treatments & cures, which is really the purpose of medical research for a medical condition is it not?

It tends to be these people:-

https://autisticadvocacy.org/about-asan ... e-believe/

So what do these people think:

Also:



The above is a little semantic, leaving aside they claim to "know what autistic people want" (they didnt ask me) , but isn't really medical research rather social programs which on its own is not a bad thing but its certainly not a replacement for real treatments that can help reduce factors that cause disability.

Also drug companies, genetic & research organisations don't really get involved in this kind of thing so again we have to ask the question what are the motivations of such people who "want to get involved in autism research" but themselves don't believe in the objective or mission statement of the organisation.

If you was a football coach and you asked a player who was interested in joining your team what brings you here? they turned around and said "i support the rival team and don't want you to win the cup" would you hire them?

People with intellectual disabilities* are (to varying degrees, depending on severity) capable of self-advocacy too. In fact, historically, the autistic self-advocacy movement was preceded by an earlier self-advocacy movement for people with intellectual disabilities. (See the Wikipedia article on self-advocacy. See also terminology note at the bottom of this post.)


Yes, however:

1) Some people are severely disabled as children, yet eventually able to develop good-enough intellectual and communication abilities to attend college. For example, Jim Sinclair, the main founder of the autistic rights movements, didn't begin to talk until age 12.

2) While no one can speak for all autistic people, there are nevertheless important commonalities between large subsets of the less-severely disabled autistic people and large subsets of the more-severely disabled autistic people. For example, sensory sensitivities are common among autistic people regardless of communication ability. But it was only because of autistic self-advocates that the larger autism community (of mostly parents and professionals) finally realized that sensory sensitivities were a real thing, as distinct from autistic children just having temper tantrums for no apparent reason.


It's a question of priorities.

There will always be enough people who favor a cure -- including rich people with lots of money to donate to scientific research -- that research toward eventual cures for various types of autism will almost certainly continue, regardless of what anyone else wants. This is especially likely given the "longtermism" fad among rich folks these days.

Anti-cure folks generally seek not to "sabotage progress," but rather to redirect scientific research into areas that address the urgent needs of large numbers of autistic people in the here-and-now, such as research into better ways to help nonverbal people acquire some form of verbal communication, research into better ways to achieve good educational outcomes for as many autistic children as possible, and research into better medical treatments for various co-occurring conditions that are common among autistic people.

Indeed, the main motives for the anti-cure movement were not the mere fact that some of us just aren't interested in a cure, but rather:

1) The high-profile pro-cure hullabaloo of the 1990's through the early 2010's was sucking money and institutional support away from anything likely to help autistic people in the here-and-now, except for ABA, which many autistic adults had been traumatized by as children.

2) Cure-oriented scientific research has tended to focus heavily on genetics, leading many people to worry that the main point was simply eugenics: to prevent autistic people from being born in the future, rather than to help any autistic people living now, in any way whatsoever, "cure" or otherwise. Genetics research certainly has a valid place, but the disproportionate focus on it was and still is worrisome to many autistic self-advocates.

3) The non-scientific side of the pro-cure movement was impelling parents to try dangerous quack treatments like bleach enemas, and was (and still is) also fueling the anti-vax movement.

4) Ad campaigns to raise money for autism cure research were extremely insulting and stigmatizing toward autistic people, thus making autistic people's lives harder in the here-and-now.

For all these reasons, many autistic self-advocates felt that it was urgent to call for "autism acceptance," to demand that the autism establishment accept us as we are now and at least de-prioritize (if not ditch entirely) "cure" research in favor of helping us, in a variety of ways, to have better lives in the here-and-now.

*(Terminology note: The older self-advocacy movement for people with intellectual disabilities is where "person-first" terminology seems to have originated. This terminology was later adopted by organizations of parents of children with developmental disabilities, including autism. It was also adopted by organizations of people with various diseases, e.g. I remember hearing about "people with AIDS" in the 1980's. It was then later rejected by the budding autistic self-advocacy movement around 1990, in favor of "identity-first" terminology, i.e. "autistic people," similar to blind and deaf people.)

ID is a spectrum in itself some at the top end can self advocate for themselves in the political sense others self advocating goes no further than rejecting a type of food or being taken somewhere they don’t want to go.

Those with ID are especially vulnerable to be swept along or manipulated by those who want different things too.

The point about re-directing medical research into co morbids are largely useless since many of the comorbids are just symptoms of the overall neurological condition itself.

Also as mentioned above many of the things ASAN want are not medical biological research but social programs that don’t involve the medical establishment at all.

It’s a bit like saying to a biotech company involved in dementia research they should put their research funds into care home facilities instead. They are a biotech company so medical is their business care homes are done by someone else.

It’s possible to treat autism as any other condition that doesn’t have to involve the terror ads from the past

I believe the term acceptance is just semantics for do nothing pushed by those with their identity agenda.

People generally accept autism today as just another medical condition like any other we are not being persecuted generally.

In the end different people want different things and have needs of varying complexity.

Their objectives are not only polar opposite they are actually in conflict

ASAN’s idea of one voice or group talking for everyone is not possible under such circumstances as there is no “us” just “those”.

I mentioned recently on another thread we already have a system in place called religion and science

Medical and gov follow the science as it’s what can be seen and measured and based on reality.

People can opt out to follow their personal beliefs like with blood transfusions or in this case their claimed identity.

It’s the fairest system that doesn’t encroach on others

I find it interesting that so many of today's researchers want to put us all in one basket. "autistic thought processes" "autism/autistic reactions to" "autistic behavior" when it is now pretty commonly known that autism is a case of uneven neurological development, and how our autism is expressed depends on the neurological development (or not) of each of us individually. Still seeking something we all have in common like green hair, backwards toes, no fingernails, that will apply to all of us and single us out as all having a common experience, when in truth our individual neurologies are actually more varied than those of "typically developing" individuals (NT).

I'm not sure that I'm understanding here. There is a schizophrenia spectrum, it's just that unlike autistic spectrum disorder there's also schizophrenia. And schizophrenia itself is divided into multiple subtitles. Really, it's much like what would have been done with autism if responsible adults had been in the room. There's even a subtype for those that don't really fit more specific subtypes.

As somebody that's probably on both spectra, I thought it was important to note that there's more similarities here than you seem to be letting on.

I definitely agree that it is a massive problem, in really both groups, that the most effected can't effectively communicate their views. The main reason I haven't needed antipsychotics in decades is that I had a psychiatrist that was willing to talk to me in terms I understood rather than probably.

It's worse when you consider that there's a definite bias in terms of how it's gerrymandered. Those with more sensory issues don't get included anywhere and if the traits aren't observed until later childhood, there again no diagnosis that covers that situation as the schizophrenia spectrum doesn't really apply until the teens at the youngest, not to mention that probably disorders don't really get diagnosed until adulthood.

I think a wider definition would have been better pending better research about where to draw the line and what subtypes may apply m

That is certainly true.


Doesn't make it "useless." Even if the co-morbids are just symptoms of a deeper underlying condition, it is likely that at least some of them might nevertheless turn out to be much easier to treat. And doing so would likely be safer than trying to rearrange one's entire brain.


That's true, ASAN (and I) want various non-medical social changes as well as medical research informed by autistic self-advocates. And of course these non-medical social changes aren't primarily the job of the medical research establishment. So?

Some of these "non-medical" changes do relate to medical practice, however. For example, I just now came home from a doctor's office where someone tried to give me a sonogram, but couldn't, because my abdomen is just too damned ticklish. I need a sonogram tech who knows how to deal with extremely ticklish people. (When I got a sonogram last year, I was seen by a tech who figured out a way to do it, but not this time.) We need this to be part of the training of sonogram techs, if it isn't already.


Big differences between autism and dementia:

1) Dementia is a degenerative disease, not a stable innate disability.

2) The major kinds of dementia, such as Alzheimer's, each affect many more people than are affected by any specific developmental disability (such as any of the many specific subtypes of autism).

The combination of these two factors makes it a very urgent high priority, in my opinion, to find ways to prevent and cure dementia.

I've learned to accept and live with being autistic, and even to enjoy some aspects thereof, but I am terrified of the prospect of developing dementia.


Many kinds of autism affect the very structure of the brain. (See the article quoted here, for example.) Seems to me that would be rather hard to rearrange, and to do so safely.


"Persecuted" is too strong a word in most cases, but there are many aspects of society that do make life more difficult for us than it would otherwise be, and that could be changed. Some of them could be changed in ways that would benefit lots of other people too, not just us. (For example, autistic people aren't the only people in the world with sensory sensitivities; there are lots of "highly sensitive people" who are not autistic.)

I'll reply to other parts of your post later.

The dementia/schizophrenia examples were just an analogy there are other ways to describe unrealistic demands organisations do roles outside the scope of their business and employees skill set.



Many but not all some autisms are likely treatable in the future

I wouldn't discount the idea that some autisms is not due to neurology, but a reaction.

No different from how some forms of ADHD is caused by trauma.

Executive dysfunction -- that's the only true overlap from ADHD and how it is mistaken from one and another.
Without EDF; an autistic remains autistic just less dysfunctional, while those with ADHD gets 'personality' at worst.

What if a lot of these autistic became AuDHD because of whatever crap was going on?
Why drag AuDHD? Why not? It's another avenue to explore and to research.

Maybe it's also relevant to the old issue around PDD-NOS within the old autism spectrum umbrella.


Then, it meant it's possible that a single autistic person can have more than different types of autisms within the same person; at least one that made them fundamentally different and affects who they are (unless they were fed with lies like how LGBTQ individuals ended up hating themselves), and one that made them autism-like for whatever circumstances or cause, likely not congruent to their personal inclinations (unless, again, fed with lies and they want it to be trendy and weird in order to standout).

The former had to be left alone with understanding and accomodations at most, the latter deserves prevention and cure.

In the perfect world, researchers already teased them all out; but no...
There's this diagnostic overshadowing, the stigma... The stupid attitudes, and the idiocy that one cannot separate autism from intellectual disability or ADHD or worse, something like psychopathy from alexithymia which not all autistics have.