The Four Kingdoms of Autism

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In the below linked blog post, National Institute of Mental Health (NIMH) Director Thomas Insel writes about the "Four Kingdoms of Autism".

http://www.nimh.nih.gov/about/director/ ... tism.shtml

I don't want to put words into Director Insel's post for him, he identifies four "Kingdoms", more or less views, in the Autism/Asperger's communities.

1. Illness

2. Identity

3. Injury

4. Insight

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I put up a poll above to see what people think of the breakout, and possibly lead to a good discussion.

I have definitely seen those four categories myself.

I would tend to lump illness and injury together, and I'd never thought of separating out the insight category, but now that he mentions it, I've definitely seen that.

Ironically, autism isn't a good source of insight into the social mind, because as a group we're impaired on pretty much any social test you can think of, while within-group variation is huge due to the heterogeneity of cause and symptoms. Conditions such as Fragile X Syndrome, Turner Syndrome and Williams Syndrome are better bets, because they show a mix of some impaired and some intact skills, and because there's no circularity of examining the social skills of a group selected for poor social skills.

Oh, and on the environmental end, prelingually deaf children and attachment-deprived children are important to study too. Especially when you separate out different types of environmental influences, such as comparing Deaf of Deaf with signing Deaf of hearing, oral deaf of hearing, and late-signers. Oh, and signing Deaf with hearing parents who either learnt sign after the diagnosis of deafness or already knew sign before (eg the younger of two deaf siblings, or a child with deaf extended family). Plus, FASD is interesting to study, although there needs to be better control for attachment and abuse history than I've seen in most studies.

Other -- his analysis rests on flawed premises, over-generalizations and a lot of oversimplification.

Animalcrackers, could you please give an example? While I know parts of it could be viewed as such, I'm curious to see which portion(s) you have the most issues with.

His analysis is over-simplified. It's like looking at a cartoon drawing of a butterfly to represent the real insect. Details have been lost and only the general idea remains.

That said, those are indeed four major viewpoints on autism--though most people in the autism community don't represent just one of them. For example, quite a few of the desperate parents trying to cure their children will go in for injury/illness ("I will do whatever I need to do to heal my child"); some self-advocates represent identity/illness ("I'm disabled and I have a lot of problems, but I am your equal and you need to accept me as I am") and others represent identity/insight ("Having autism is a part of who I am, an interesting experience, and generally beneficial to human society").

Personally, I take a lot from the identity and insight ideas, and a little from the illness idea--not the idea that a cure is necessary or desirable, but the very real dysfunction I face daily, and which many other autistic people face, which is not just atypical cognition but skills which are much harder to learn than they are for NTs. So I think autism is a disability, but it's also part of me, and acceptance and treatment make sense, but cure does not, both because it is logistically impossible and because it is unethical. I want to develop better autism treatment and education, but I also want to increase integration and acceptance.

Still, if you are going to teach a toddler what a butterfly is, a cartoon drawing will do well enough, and this article seems to have been written for people not too familiar with autistic culture.

While some self-advocates do dismiss concepts of problems and treatment re: autism, not all do. By his wording the author is conflating the latter group of people with all other autistic self-advocates -- including those who believe in acceptance of neurodiversity at the same time as they acknowledge that being autistic can be very disabling and can cause very real problems, and that some autistic people may benefit from treatments to help with at least some of those problems.

Self-advocates come in all stripes and colors...to self-advocate means you advocate for your needs to met, for you rights and for your value as a human being -- not for any particular perspective. Are autistic self-advocates who oppose neurodiversity and seek a cure for themselves, or who have alternative perspectives, any less real, any less deserving of being acknowledged as "self-advocates"?

Many parents and even some medical practitioners and researchers/scientists (no idea how many) talk about and believe in acceptance of neurodiversity as well -- it's not just people with autism....they may not be the majority, but they exist and the author's wording suggests that they do not.



There's actually a lot of possible overlap between the perspectives as he defines them.

The medical model of disability (illness/injury) can and does exist alongside the social model (identity) of disability -- the two models are not exactly opposites, and as such are not mutually exclusive....a person doesn't have to pick one or the other, particularly if they can take each model apart and look at the pieces rather than looking only at the conclusions that others have drawn from those pieces.

A person can acknowledge that something is a disability or disorder (illness/injury) at the same time as they explain that their disability shapes their lived experience and perspective(identity) and as a result is a core part of who they are; It is theoretically possible for a person to see their autism as a disorder and a part of their identity simultaneously. A person who sees being autistic as part of their identity can still seek treatment to alleviate autism-related problems that cause them suffering.

A person could even seek acceptance of autism and promote the provision of social supports before cures/prevention/treatments, while still seeing a cure/prevention/treatments as a potentially (or even definitely) positive thing -- in this case it wouldn't be "either/or" with respect to social vs medical supports/interventions, but could be a matter of somebody pragmatically deciding which approach is most realistic and/or likely to have the most positive immediate impact for autistic people.

A person can, theoretically at least, see that something is a disability or disorder and still see disability and disorder as natural, normal (and in some, if not all, cases/aspects even beneficial or positive), and something to be accepted rather than fought against/eradicated within the larger scheme of human diversity and natural variation. The reason for such a perspective could be ideological, pragmatic or both.

It seems to me that people often ascribe to both the social and medical models of disability to some degree; Treatments and accomodations are both suggested for people with autism (even if the accomodations are only meant as temporary while the person is supposed to be learning how to be normal)-- unless a person who ascribes to the medical model of disability refuses to provide any accomodations at all to a person with disabilities, they are acknowledging (however implicitly and unintentionally) the reality that the social model of disability applies to the situation as well.



While it may be true that many scientists are, first and foremost, just curious about how human brains work, researchers are human and prone to adopting social values -- there is bias in research studies, and many, many of them are done with the ultimate goal of working towards cure, prevention, or therapies... studies get funding based on how relevent they are to things like cure, prevention and therapies. The vast majority of studies I've come across are very focused on finding causes for aspects of autistic behavior and cognition, rather than simply studying autistic brains to see what can be seen. In other words: The "Insight" perspective is often colored by other motives and priorities, and by the researcher's ideological standpoints that exist beyond their curiosity. All studies that aim to prove something about the social brain by studying autism are inherently structured around ideas about normal vs. abnormal, adaptive vs. non-adaptive, positive vs. negative, so I don't really see the insight category as separate from any of the others.

I'm sorry if I'm not making sense. I keep re-reading what I've written and I honestly can't tell if anybody will understand my points.

I know that I may be missing the point of the article, too...just not really understanding it -- I may be unable to fully appreciate what he's saying because I'm not good at generalizing about other people's perspectives... perspectives are so very complicated and nuanced and individual that I struggle to think about them in broad categories like that.

Sorry to ramble.

Callista, you said a big part of what I wanted to say with much more skill than I did!

I'm of the Identity Kingdom.

Identity

Self-advocates with autism, like self-advocates in the deafness community, have replaced the medical model of illness with the language of diversity and identity. They, along with many in the educational and disability communities, view autism as a difference in need of accommodation, not a disorder in need of cure. The identity kingdom was founded by young adults with a past or current autism spectrum diagnosis who can live independently but who face a range of challenges in what they describe as the “neurotypical” world. Rather than seeking to become “neurotypical,” they advocate for acceptance or inclusion (“nothing about us without us”) as well as recognition that autistic thinking may yield innovative solutions. Some self-advocates interpret genetics research as eugenics, see causal explanations as irrelevant, and view treatment as coercive conformity. As with many other disability communities, their focus is on community supports, educational and occupational services, and civil rights.

Other - people should pay Callista to write about autism.

I am going with this one.

And I'll join that--I often find myself thinking "This is really clear and well expressed" and then see that it's Callista.

I like insight: I am doing research in autism/neuroscience now.

I think we do have to take into account his position. Congress still has more than a few curbies, and I'm surprised he went as far as he did in the blog post.

The model is fine from my perspective. Particularly in light of his conclusion:

"Instead, by focusing now on both short term needs and long term solutions we need a collective commitment to science and service to improve the world for both children and adults on the spectrum."

By segregating the model into "Kingdoms" (even if not perfect) this last sentence is well supported. In my opinion, the details about the organization of the segments are a non-issue. He could have just as easily called them blueberries, bananas, mangoes and apples. The conclusion made in the above quote... is the meat and potatoes. The message to me is, rather than segregate and spin wheels in the mud arguing about trivialities, integrate... and solve it (or improve it).

Agree!

Wow, thanks for the compliments! I do like to write, but I don't know if anybody will ever pay me for it. I guess it's going to come in handy when I go into research, and have to write about the things I learn.