Who are the experts on autism?

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The term "expert on autism" seems to be applied somewhat loosely, especially in popular media (and also on social media).

This is one view:
https://michellesuttonwrites.com/2017/0 ... sm-expert/

In your view, who are the experts? Who or what sources do you take most notice of?

There can be no experts in something where there is no agreement as to what it is.

Still the basic point of the article that autistic input into learning about autism is a must is correct.

they're usually fellow autistics.

We are the experts on autism because we have it.

A mother writes:
http://thisoutnumberedmama.com/yes-say-hes-autistic/

Her summary comment from the above:
"Don’t blindly trust the experts. One thing an autistic person told me that put it all into perspective is this: “Those experts screaming for person-first language are the same people who used ‘mental retardation’ as a diagnosis”.

"Person-first language" is ridiculous.

Real abuse doesn't come from people who call us "autistic people". Real abuse comes from people who insist that we are faking our disability as a form of gaslighting.

Came across this:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5368186/

Here is the abstract:
Autistic and non-autistic adults’ agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.
Keywords: autism, knowledge, stigma, neurodiversity, autistic expertise

Here is the Conclusion:

Conclusion

This study demonstrates that autistic people should be considered “autism experts” as they often build upon insights derived from the lived experience of being autistic by researching autism systematically. Autistic people who have developed heightened understanding of autism may be particularly well suited to teach other people about autism, as they tend to endorse less stigmatizing conceptions of autism, have reduced interest in making autistic people appear more normal, and may often have heightened empathy for the challenges others face (Komeda, 2015).

As our participants were adults who were motivated to seek out dialog about autism by participating in an uncompensated online study, we do not suggest that all autistic people exhibit heightened factual knowledge about or reduced stigma toward autism. As many of our survey respondents indicated, each person, regardless of whether or not they are autistic, is unique. Some autistic people seek out factual knowledge about autism while others believe that they can only be experts in their own particular form of autism (e.g., Jones et al., 2013). Autistic people have been reported to gain greater understanding of autism, themselves, and how to effectively educate others with age (Jones et al., 2015). The current findings suggest that autism trainings for autistic youth would benefit from inclusion of knowledgeable autistic adults as program mentors.

Findings also provide preliminary support for Nicolaidis’s (2012) hypothesis that autism awareness campaigns that focus on the importance of normalizing and curing autistic people do indeed contribute to stigma toward autism among both autistic and non-autistic people. Although knowledge is not yet power for many autistic people, identifying how autistic people think about autism is a first step toward developing research that is relevant to their interests and the needs of the community whom the research is intended to serve. Furthermore, the study suggests that involving autistic people as well as other people familiar with and knowledgeable about autism, such as close relatives, as empowered collaborators in the research process may help produce more accurate understanding of autism alongside greater acceptance and reduced stigma.

It's Aspies/ Autistics who are able to express themselves and share their experiences with the world. Yet, having read Neurotribes (which talks about this subject in detail), the reason it has yet to be acknowledged as such is due to how the world is a) how the narrative of autism has been shaped by the psychiatric community as a tragic and incurable mental illness(back when the first papers were posted, no one ever thought anyone who was on the spectrum could publish their own narrative or take care of themselves, despite the fact that autism / aspergers has always been around) , b) most of the research into autism is into causes and cures, continuing to drive the idea that those on the spectrum are in need of assistance and unable to advocate for themselves, and c) the powers that be (Autism Speaks, Media, Big Pharma) profit off the idea that the experts aren't those that experience it, but the ones who study it and have pushed the idea that autism is a death sentence (metaphorically speaking).

People suck.

So if you get cancer and go to an oncologist, that oncologist can't be an expert in cancer unless they've had cancer themselves? The theory that you can't be an expert in a medical condition unless you've had it yourself doesn't hold for any other condition so why should it hold for autism?

I am autistic, have 20 years expeince working with classic autistic children. I am a SPELL and autism trainer and have a masters level post grad in Autism and Asperger syndrome (Distinction)

I reckon that makes me and expert.

(although I have just corrected my English grammar 4 times)

I remember surveying the various diagnostic criteria for autism diagnoses as published since the 1980s (and as much of the original Kanner and Asperger writings as I could find). I have described elsewhere at WrongPlanet.net that I arrived at my diagnostic assessment loaded with stacks and stacks of personal records, and my own written descriptions of my behaviors and characteristics based on 18 months of reading the current criteria and exemplars. I was flattered that the diagnosticians offered to refund a part of my fee because I had "done so much of the work" for them. I have been slightly embarassed since then because I believed I had acted presumptuously, but, now I see that I might have been truely helpful in my own diagnosis.

So, yes, considering how user-friendly the current criteria are, I believe that many autists would be quite well situated to determine the real experiences of others with autism than many of today's clinicians. If they are, in fact, as able, why wouldn't world-class diagnostic clinics and universities reach out to include knowledgeable autists on their staffs?

As we say here, "that's pretty damn good!"

The topic of "autism" is insanely huge and complicated and therefore there will be many facets of expertise. These are generalizations but: people with autism are the experts in first-hand experience; parents of those with autism are experts in how to raise kids with autism; scientists who study autism are experts in their own small respective fields of study (e.g., therapeutics, genetics, MRI, etc.); and so forth.

So I don't think that question, "Who are the experts in autism?" really has a good answer, because there are many correction versions of it depending on what area of autism knowledge you're referring to.

If you're asking who an author is referring to when s/he writes "autism experts" then usually s/he's referring to one or more scientists who're in some relevant field of study. It's used loosely to convey a sense of authority in the media piece. However, if you're using the opportunity to debate who the experts are, then see my earlier answer above.

That's me 2 cents.

Cancer has been known for much longer and is much more common then autism so the cancer experiences have been much more known about. Up until the last few years the media would not even quote autistics. Unlike cancer autism involves a different thinking process. Most everyone has had pain, nausea weakness etc. Most have not been autistic. NT's can be experts in Autism, but it is all to uncommon.

You have an excellent point there. Knowledge is knowledge: it doesn't matter who holds it. It doesn't matter whether it's a human, or a machine, for that matter.

Is there anybody here that is good at math? Let's see, do you guys know that

1+2+3+4+... = -1/12

? That is, the result is not infinite, not positive, and not even an integer. Or, that

1+2+4+8+... = -1

? Well, what if I tell you guys that in the mathematics community these two are undisputed "facts"? No, they are not jokes. Google for "1+2+3+4+..." and you shall see.

And you thought you knew how to add numbers?

Even the casual math enthusiasts would get it wrong. They think that these identities are "tricks" that simply give "useful results," but that are not real equalities: that the equal signs above have special meanings. Really? then why don't we look at something simpler, such as:

1 = 0.99999...

? Is the last identity a true equal sign, or not? I mean, do people even understand what numbers are?

Numbers are adjectives. So the concept of say, 3, does not represent the three dogs that you see over there. It does not represent the 3 apples that you see on the table. Just like the adjective red: it's not your dress, it's not your blood, it's not your lips, and it's not the strawberry that you just ate. The numbers are collections of the related items. They are by essence what's known as "equivalent classes" in math. And the "equality" that we use in math, is the "equivalence" as in equivalence classes. It's only when you understand this point, that you can ever come to understand the three identities above. If you think you can spend a few days and understand what numbers are and understand the above identities, I'd say you are dreaming. Nope, we still don't fully understand numbers. There are still many ways to look at numbers.

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What is my point? My point is, science is science. Science is done on paper, with your hands, with diagrams, charts, graphics, equations, and with patience and sweat. Science is not done by talking. Nowadays, if someone sends me a book on autism, and it does not come with drawings/pictures/diagrams, I don't bother to read it. Visual-manual communication is a higher form of thought process.

In autism, it's easy to make mistakes. Because we are humans, and we operate with our own biases. You need to go beyond what your experience, intuition, feeling tell you. If you just rely on what you know, or what you have been taught, you will probably not find the right answer, just like you'll never be able to tell that 1+2+3+4+... = -1/12.

And most importantly, you cannot understand autism by talking.

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With those words said, read these articles that I've written:

http://www.eikonabridge.com/AMoRe.pdf
http://www.eikonabridge.com/fun_and_facts.pdf
http://www.eikonabridge.com/anxiety.pdf
http://www.eikonabridge.com/Tomatoes.pdf

So whenever people tell me that the are the experts, or that they have decades of experience in autism, I just smile.