Is it OK to be autistic and not embrace autistic culture?

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"I like the idea of how the members want people to treat them right and have autism recognised as not being a disorder"

Hahaha, that can only be teens and 20-somethings, because let me tell you, after you've been in the workplace and been kicked around for a few years, not only will you understand that it is in fact a disorder, you will be grateful to be able to claim disabled status. 'Cause let me tall ya, kids, the world is not going to make any exceptions for you, the way they do for people with disabilities they can see. If you're not in a wheelchair, or otherwise obviously disfigured, as far as most people are concerned, you're faking it and you don't really have a problem. And don't think the law or the government are going to come to your defense when you're discriminated against. Autism is a very real neurological dysfunction, and you are not "normal" and never will be, so face that early and often and get used to it. That doesn't make you a bad person, any more than being born with a club foot would, but it is a handicap, and you will always struggle to function in a world that was not designed to facilitate your comfort.

This idea that everyone and everything is out to discriminate against autistic people. This idea of neurotypical privilege is another example. Another example is believing that teaching autistic people "eye contact" is cruel or that eye contact is society being too judgemental. These are some examples. It's essentially using your so-called victim status to expect society to cater to you and coddle you. That's basically what it is.

Do Autistic people live in their own little world?

Autistic people do live in their own world, but not in the way most people think they do.

Autistic people are in their own world in the sense that they don’t have a cultural identity. “Neurotypicals” tend to identify with one or more specific cultures to the point that they’re incapable of distinguishing their individual identity from the group identity and their individual beliefs from the group’s beliefs.

Question the religious views of a Christian, a Jew or a Muslim and they all tend to feel personally offended, even though you’re merely questioning their views and not them as a person. The same applies to political views or any views held so dearly people identify with them.

Alongside group identity, “Neurotypicals” also develop shared faith / prejudice. “Faith” and “prejudice” and are respectively positive and negative labels given to the same attitude and behavior : believing something very strongly without being able to prove it. A key advantage of shared faith / prejudice is that it simplifies communication among people of the same cultural background. People know what to expect from each other and how to behave in another’s presence with barely any information at all. A key disadvantage, however, is that this strategy often fails when people come in contact with others who don’t share the same cultural faith / prejudice.

Autistic people lack the “implicit learning” mechanism that is responsible for this kind of group thinking, which is what makes us much more individual in our cognition, our emotions and our communication styles. While Autistic people do adopt a lot of behavior and knowledge from their environment like anyone else, they do so much more consciously and are consequently much less emotionally attached to this behavior and knowledge.

Autistic people therefore tend to hold less faith / prejudice than “Neurotypicals”, which — in a sense — makes them more flexible than “Neurotypicals”. A downside of this, however, is that this complicates communication with “Neurotypicals” and culturally isolates Autistic people from their environment.

In a way, Autistic people have their own unique individual cultures. In that sense, we truly do live in our own little worlds. We live in our own little worlds, not because we choose to or because we fail to understand the world we live in (some Autistic understand actually the world far better than many “Neurotypicals”), but because our inability to relate to the culture we live among sets us apart from that culture.

Consider how it would feel to be a North-American or Western-European living as the sole immigrant in a rural community in East-Asia, sub-Saharan Africa or South-America. That is exactly how a person with Autism experiences every day social interactions.

Ironicly, this makes Autistic people more adapted to living among people of a different culture. One one hand, it’s because people tend to be more forgiving about social mistakes and quirky behavior when faced with a foreigner. On another hand, that’s because people with Autism are so used to living among people who identify with a culture that feels alien to them that actually living among a foreign culture feels only marginally more alien than their every day experience.

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Agree. Autism is a debilitating disease.

Autism is NOT a disorder

In the DSM-5, Autism is classified as a neurodevelopmental disorder. However, this notion is controversial and outdated. Many people who have been diagnosed with Autism do not consider their Autism a disorder and scientists are increasingly starting to join their ranks.

Because Autism comes with both extreme weaknesses (flaws) and extreme strengths (gifts), scientists are starting to support the notion that Autism is just a natural but extreme variation in functioning rather than a disorder to be cured. This means that Autism — although at the edges of what qualifies as normal human behavior — is a part of normal human biodiversity.

It is also argued that many (if not all) symptoms associated with Autism are not so much caused by Autism but rather by Autistic people being forced to conform to the mould of a society designed for “Neurotypical” people. That means that these symptoms can and should be alleviated by allowing Autistic people to be themselves instead of forcing them to behave in ways that are alien to them. One might even argue that in a hypothetical society run by Autistic people, it’s the “Neurotypical” who appears to be have some kind of “disorder”.

From this perspective, labeling Autism as a disorder is not just wrong but damaging for the Autistic community, because it creates a false perception that people with Autistic are intrinsically less productive members of society, whereas many people with Autism are not just equally productive but even more productive than “Neurotypicals” when fostering an environment that allows their strengths to compensate for their weaknesses.

Changes in the scientific perception of Autism

Eugen Bleuler, a Swiss psychiatrist, was the first person to use the term Autism in 1911, as a reference to one group of symptoms of schizophrenia. Bleuler defined Autism as a detachment from reality associated with rich fantasy life:

“The […] schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes […]; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolute predominance of the inner life, we term Autism.”

Bleuler described a rich variety of clinical manifestations of Autism: poor ability to enter into contact with others, withdrawal and inaccessibility (in the extreme cases, negativism), indifference, rigid attitudes and behaviors, deranged hierarchy of values and goals, inappropriate behavior, idiosyncratic logic, and a propensity to delusional thinking. This enumeration demonstrates that Autism is resilient to a simple medical definition because none of these manifestations is sufficient or necessary to diagnose Autism.

In the 1940s, researchers in the United States began to use the term “Autism” to describe children with emotional or social problems. Leo Kanner, a doctor from Johns Hopkins University, used it to describe the withdrawn behavior of several children he studied. His 1943 paper described 11 children who shared high intelligence, a profound preference for being alone and an “obsessive insistence on the preservation of sameness.” Kanner considered Autism a form of “childhood Schizophrenia.”

Around the same time, in 1944, Hans Asperger — an Austrian pediatrician — described four children in his practice who had difficulty in integrating themselves socially. Asperger identified in four boys a pattern of behavior and abilities that included “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements”.

In spite of his unfortunate usage of the term “psychopathy”, Asperger passionately defended the value of Autistic individuals, writing :

“We are convinced, then, that Autistic people have their place in the organism of the social community. They fulfill their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers.”

Asperger called these children “little professors” because of their ability to talk about their favorite subject in great detail. Asperger noticed that many of the children he identified as being Autistic used their special talents in adulthood and had successful careers. One of them became a professor of astronomy and solved an error in Newton’s work he had originally noticed as a student. Another one of Asperger’s patients was the Austrian writer and Nobel Prize in Literature laureate, Elfriede Jelinek.

Nevertheless, Asperger’s paper was published during wartime and in German, so it was not widely read elsewhere. For several decades, Kanner’s notion of as a form of “childhood Schizophrenia” persisted in academic literature, and psychoanalysts typically blamed emotionally emotionally distant mothering (known as the “refrigerator mom” theory of Autism). This theory is considered debunked by (almost?) all experts today.

In his 1961 work The Myth of Mental Illness, Thomas Szasz famously argued that what is commonly qualified as mental illness is merely a deviation from societal norms. Szasz argued that mental illness is a metaphor and not a genuine disease, that it is merely a way of dealing with problematic people in society. “Psychiatry is conventionally defined as a medical specialty concerned with the diagnosis and treatment of mental diseases,” he wrote. “I submit that this definition, which is still widely accepted, places psychiatry in the company of alchemy and astrology and commits it to the category of pseudoscience. The reason for this is that there is no such thing as ‘mental illness.’” By the late 1960s, he was perhaps the most famous psychiatrist in America. However, he was also the most despised among peers. This, and his theories being rooted in the discredited field of psychoanalysis, resulted in his work usually being either ignored or vehemently attacked.

In 1971, Israel Kolvin conducted seminal research that highlighted the distinction between Autism and Schizophrenia, which influenced the decision to include Autism and Schizophrenia as two separate categories in in the DSM-III. Still, most of Kanner’s description of Autism wasn’t challenged until Asperger’s research was referenced in a 1981 paper, Asperger’s syndrome: a clinical account, by English researcher Lorna Wing.

Objective criteria for diagnosing Autism soon followed, as did a clear separation from childhood schizophrenia, although it was not until 1991 that an authoritative translation of Asperger’s work was made (by developmental psychologist Uta Frith), which officially introduced Asperger’s work to the English speaking world. Following this publication, the early 1990’s marked the beginning of a gradual change of the perception of Autism towards a very diverse spectrum condition.

In 1997, Professor of developmental psychopathology Simon Baron-Cohen (a cousin of actor and comedian Sacha Baron Cohen) developed the empathising–systemising theory, which suggests that people may be classified on the basis of their scores along two dimensions: empathizing (E) and systemizing (S). Baron-Cohen suggested that the typical male brain is has a stronger affinity with systemising and the typical female brain has a stronger affinity with empathising.

Baron-Cohen further suggested that people with Autism show stronger affinity with systemizing over empathizing compared with their “Neurotypical” peers (irrespective of sex). This led to the conceptualisation of Autism as an “extreme of the typical male brain”. Later, in their 2008 study, Bernard Crespi and Christopher Badcock expanded upon Baron-Cohen’s theory and conceptualized Psychosis as an “extreme of the typical female brain” and the diametrical opposite of Autism.

Note that Psychosis being the “diametrical opposite of Autism” doesn’t mean that Autism and Psychosis are mutually exclusive. It merely means is that they are distinct and radically different brain strategies that are associated with respectively extreme Masculinity and extreme Femininity. While some individuals can be considered as purely Autistic or purely Psychotic, others experience symptoms of both Autism and Psychosis. Schizophrenia, Bi-Polar Disorder and Borderline Personality Disorder are typical examples where Autistic and Psychotic symptoms co-occur. The exact differences and similarities between these different “conditions” nevertheless remain very poorly understood.

By the late 1990s, online groups of Autistic persons started publicly defending the notion that that Autism is but a variation on the neurological norm and should be recognized and respected as a social category on a par with gender, ethnicity or sexual orientation. Since the beginning of the 21st century, this concept is now increasingly picked up by scientists as well, although it’s still considered controversial and thus far from universally accepted.

With recent works like Paris Williams’s 2012 publication Rethinking Madness and Wouter Kusters’s 2014 Philosophy of Madness, a similar paradigm shift has begun involving Psychosis — the “opposite” of Autism. ADHD has also been mentioned in this context, and the term neurodiversity has been coined in reference to a more general application of this concept, roughly echoing the ideas of Szasz many decades after they were first voiced.

Meanwhile, Olga Bogdashina’s little known 2003 publication is one of the first scholarly works to accurately describe Autism in all its diversity and accurately correlate Autistic behavior with corresponding emotions and cognitive styles. This work is the first of several to provide an in depth analysis of the many subtleties and nuances found in the language and perception of Autistic people.

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I was diagnosed with autism when I was four years old. Now I am in my mid-teens and I have been looking at how the internet sees autism. I came across the autistic rights movement when I was 15. I like the idea of how the members want people to treat them right and have autism recognised as not being a disorder, but I feel I don't fit in with the autistic culture. I just think I don't meet the criteria for it because:

1. I rarely, if ever, stim. As a kid, I used to stim quite a bit (mostly spinning round objects), but I don't do it so much now that I'm a teenager. I don't even own a single stim toy. (I am pro-stim btw)

2. I have learned to cope with my sensory issues and anxiety very well over the years. They were very bad when I was a kid, but now they are only mild and under control.

3. I'm not that offended by the concept of curing autism (it does bug me a bit), but I do think we should be accepting it more as a difference.

4. Autistic culture supporters seem to only ever talk about autism. I prefer varied conversations and if I were an autistic culture supporter, I would talk about so much more than autism (e.g. what I am doing in my life etc).

5. Spelling autism with a capital A REALLY bugs me because it's not a person's name or a brand, unlike Asperger syndrome, which was named after Hans Asperger. I get that it's because people identify with the culture, much like how deaf people use "Deaf" if they identify with their culture.

6. I sometimes worry about what people will think if they find out I'm autistic.

Just so you know, I am anti-Autism Speaks. I don't feel it's right to research into a cure for autism, especially if you only cater towards families with autistic kids and not autistic people as a whole. I just want to know if it's OK to be autistic and not embrace the culture, if there are any like-minded people here, please feel free to reply. Thanks

The world we all live in, is the world of the Normals.

avoiding offensive words like "people with autism"

What makes "people with Autism" offensive?
What are the alternatives?

I personally take offense at Autism being considered a disorder, but I fail to see what could possibly be an issue with calling people with Autism "people with Autism"...

My view is that there is no single autistic culture worldwide

For example, the change of languages from with autism to autistic can help parents etc to be more accepting and stop them being so desperate for cures.

Ultimately, I am comfortable in my identity as an autistic person and i will defend it. I tried passing for and masking and it didn't work out, I got ill and ended up with more challenges than I started with. My aim now is to be autistically happy and I'm still learning that what means.

However, I am the product of UK culture specific to my reason

Hope that helps

This idea that everyone and everything is out to discriminate against autistic people. This idea of neurotypical privilege is another example. Another example is believing that teaching autistic people "eye contact" is cruel or that eye contact is society being too judgemental. These are some examples. It's essentially using your so-called victim status to expect society to cater to you and coddle you. That's basically what it is.

For me, it starts with embracing the notion that the difference between Autistic people and Neurotypical people is like the difference between Linux and Windows.

The language thing is a subtle part of English.

'With' implies separation, for example, I am sat on the sofa 'with' my phone. The phone is separate from me. I could leave it behind or change it for another phone.

'With autism" implies there is a person and there is autism and the two can (or should) be separated. With many parents they only really seem to make progress once they accept the autism is just part of their child. Eg, rather than fight it and see if as an enemy, come to the understanding it's just a set of traits which brings with it strengths and weaknesses.

Autistic traits are not always disabling and in a nutshell this is why acceptance is so important. Once people accept autistic people more and stop getting so upset about 'how we act' and start being proactive to modify the environment the disability is much reduce.

Hope that helps provide more examples etc. Sorry it's a bit off topics.

My experience with most NT people who I've told about my autism is that they're mostly really helpful and understanding, not out to discriminate at all. I've come across the odd person here and there who seems to have a really negative attitude, but my feeling is that you get that kind of thing everywhere.

With the eye contact thing though, to me it feels like being stabbed in the eyes to look at someone elses eyes... I don't see why myself and others like me who experience it as painful need to learn to do it.

I really like this comparison. It really makes me smile to think that I'm running Linux when most people are running Windows. Love it! Thanks.

"There are 10 kinds of people in the world - those who know binary and those who don't! "

Don't get me started with IT jokes