Is Asperger's real and discrete?

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Preface, I am an Aspie and identify myself as such.

Recently I was messaged by an Aspie on another board who wanted to start a civil rights movement for ASD. I've contemplated what such a movement would look like, and concluded that starting one would be difficult, in part because it is usually allistics who decide who is and who is not ASD, (making it difficult for us to become a "liberated" community) and also because ASD, in particular Asperger's, to me seems more to be a way to label children with social difficulties and reimburse for services. We all can present differently and have completely different symptoms. Outside of social issues, the other symptoms (hyperfixation, routines, stimming) can be found among the neurotypical population as well.

As such, I don't believe Asperger's is a discrete disorder with a specific underlying etiology. It just describes kids who have trouble socializing and happen to have a few other traits to significant degrees that are found in the general population. Sure, we're impaired, but I don't think there's one underlying reason for the impairment. I think we're just a little farther along a normal spectrum of traits for individual reasons.

Mental health professionals continuously redefine the spectrum. They argue about what traits are. Many children are diagnosed chiefly in order to reimburse services, not because they clearly present with ASD. It seems to me that a civil rights movement for hfa and Aspies would really just be about helping out people who are a little odd in general, since I don't think that ASD is a static entity. It'll evolve however clinicians want it to, in keeping with insurance practices and societal expectations. Some of us view our particular lot in life as a curse, a gift, or neither. We don't all have one agenda when it comes to trying to better our lives.

Sometimes I find an Asperger's diagnosis disclosure to be circular. I tell people I have Asperger's to explain why I act the way I do...which was decided because I act that way. (I do this because I have a label that says I do this). Allistics seem to be more sympathetic when I give them the label, and it does kind of communicate that I don't want to come off as rude or distant.

Still, I can't help but feel that many people with "ASD" all really have different underlying reasons for being the way that they are. Especially Aspies. I'm skeptical that we all have the same discrete underlying pathologies that explain our behavior. I'm glad to have the label, but I believe its existence has much to do with insurance companies and the way special ed services work, and less to do with being one coherent entity.

However, feel free to change my mind. I'd like to hear others' thoughts on what ASD or Asperger's is.

I agree that ASD is just a category of people, a category whose boundaries are fuzzy, subjective, arbitrary, and primarily bureaucratic in purpose. The number of known genetic anomalies that correlate with autism is now over a thousand.

I agree also that an effective civil rights movement needs to define itself in a way that is not dependent on external gatekeepers (such as clinical psychologists). To that end, the nascent autistic rights movement (in the 1990's) used the term "autistics and cousins," where a "cousin" was a person with strong autistic traits but not an autism diagnosis. See:

- Autism Network International: The Development of a Community and Its Culture by Jim Sinclair
- Reviving the concept of cousins by Mel Baggs

Perhaps, instead of "cousins," a clearer term might be "autistic-like." So an autistic rights movement needs to advocate for the rights of "autistic and autistic-like people." People could self-identify as "autistic-like" without requiring a diagnosis.

Yes there would be a variety of opinion within the movement. There would need to be a variety of groups representing different opinions, not just one big organization. But that's been true of all other civil rights movements in the past, too.

There already exists one well-known civil rights group for autistic people, the Autistic Self Advocacy Network. It would be desirable to have more such groups.

In order to have an effective civil rights movement, we first need a much bigger and better organized community than we have now -- a community that will serve our immediate needs as well as be a base of support for our civil rights movement.

(See the separate thread Building the autistic community?, especially my posts in page 2 of that thread. See also the threads Autistic-friendly workplaces and Autistic-friendly social skills vs. blending in with NT's.)

I'd love to be introduced to your friend, by the way. Feel free to PM me.

EDIT: See also the separate threads on The current state of the autistic rights movement and Response to some concerns about neurodiversity paradigm.

I think the Realness and Discreetness of the Asperger's label changes with the development age of the person with the diagnosis.

For children, yes the label is mostly driven by parents or schools to gain help and accommodations for their children. Whether it is accurate is often of secondary concern. The label is seen as a "key" to unlock resources and support. Therefore the label can be “fuzzy, subjective, arbitrary, and primarily bureaucratic in purpose” as you said, and it’s still seen as useful.

ASD Diagnosis = Help for my kid. I want help for my kid, so I’ll seek a diagnosis to get the help they need.

However, for children the label is usually driven by people who are not the actual person with the "problem". It is stuck on them by someone else. It's utilitarian in purpose and the child usually has little say in it.

But, I see things change for teens and adults as a young person become their own person and the issue of individual identity becomes very important. The adolescent/adult person may then pick up the Autistic or Aspie label themselves and say "Yes , that word Asperger's describes my experience and I identify with others with that label because we share a similar experience, they are my people, my tribe". (That's what Wrong Planet is for me, a kind of family and tribe). The person then sticks that label on themselves by choice. An official diagnosis may not even be important to that person. The medical system no longer owns the Asperger's term, its copyright has expired and so anyone is free to use it. Some people may use it as a fashion accessory. I don't know why you would want to paint a target on yourself to attract people to mistreat you just to be fashionable.

People (even children) have a stronger attachment to labels they choose for themselves rather than those labels imposed on them by others. I think this is why self diagnosis is largely an adolescent/Adult phenomenon, Diagnosis = understanding of myself. The label isn't usually driven by the access to support or tangible resources. Let’s face it, there is little funding to help adults on the spectrum who are verbal and not intellectually delayed. Not at least in my country.

"Aspergers" still has great personal meaning to people even though its 5 years since it was a label that has been a official key to unlock resources and support. It still useful cause people are comfortable with it and it helps easily identify a sub group of autism. It’s much easier to understand than DSM-5’s complicated specifiers and support levels, which even professionals often don’t understand.

A major part of the existing Autistic civil rights movement is an attempt to wrest control of defining us from
allistics.

Separating Aspergers from autism has proven counterproductive in many ways. A larger group is usually more successful then a bunch of smaller groups. The Aspergers label has at times been exclusionary. A lot of ”aspies” are closer to being “autistic” then they realize. All it takes may be a few significant setbacks that are typical in life to have have an aspie present as a the “low functioning” autistic they think they aren’t.

Like autistic people black people and LGBTIA people have very little in common with each other and yet they have created civil rights movements that have had successes. Our civil rights movement will fail if we emphasize our differences and ignore our comminalities.

I think eventually we will find that there are perhaps thousands of different neurological differences in people that are correlated with traits as varied as intellectual capabilities, sensory sensitivity, attention capabilities, tendencies towards routine, introversion, visual abilities, etc. I'm sure many of them are double edged words, in that some traits being more capable correlates with other traits being less capable. Probably everyone in the world has one or more traits winch are statistical outliers compared to the average of the global population, however some people might have hundreds, and others might have even more. A small number differences between people likely produces our different personalities and interests. Eventually though, enough of these differences culminate in a noticeable increase in difficulty that person has in functioning with the rest of society, ranging from minor inconvenience to major issues

Now, it does seem likely that there are 'clusters' of traits which likely share a common neurotype. Even so, I think that our labels such as Autism, ADD, OCD, etc are blunt tools for a precise problem. Unfortunately, the human brain is adapted heavily to over-generalization and pattern recognition. This is why we're prone to seeing faces in electrical outlets, racism, and conspiracy theories.

I totally agree here and it's not medical professionals doing it, it's the schools because they get funding from the state and they use that label to help students. That is what they are doing to my son and he got a anxiety disorder diagnoses from a medical professional so I need to update his IEP. It might change his IEP, it might not. But it might change the way they help him like how to control his emotions like he is already working on.

And I don't think parents should tell their child they have AS if it doesn't fit and it's done for the school purpose. Because what happens when they decide to read about it, they might think "yeah this explains it all and all my social difficulties and why I would get so easily upset and why I hated change" and it wouldn't be they put that label on themselves, it was already put on them. Then there would be confusion because how do they explain their symptoms? So they maybe have another disorder that hasn't been discovered yet.

My ADOS 2 score : Social communication 3(Autism level) and social interaction level 5(Asperger's level,6 being the cut off for autism) . Therefore one = autism level and one = Asperger's level. Yet a singular dx has to be given , and in that situation the 'less severe' dx is given .