Aspies For Freedom

Hello - newbie here, from Ireland, name of Roderick BTW.

I have been running through the discussions on this topic about how we should go about getting ourselves classified as a minority - in particular whether we should try and get ourselves seen as a racial minority, part of the disabled rights camp or what have you.

My view is that we should go straight to the heart of the thing and state that we are a neurological minority. I think this is far better than claiming we are some ethnic or racial group, particularly since recent research has suggested genetic differences between races are so small that the whole concept of race has become problematic. On the other hand, stating that we are a neurological minority goes straight to the core of the matter - that what makes us a minority is that our brains are hard wired in a way that is different from NTs. True, it does present the challenge of opening up a whole new paradigm of minority thinking but there is a precedent for this - before the gay rights movement came along there were no sexual minorities, only sexual pathologies and perversions. At present there is similarly no concept of neurological minorities, only neurological disorders.

What do people think?

Hi Amy and everyone else. I really should say something about myself really but I'm constantly pressed for time. So busy, busy, busy. Suffice to say that I am pretty convinced that I have mild AS but haven't been able to get diagnosis due to lack of facilities in NW Irleland.

Anyway, to get back to my main point, the reason why I am arguing for neurological minority is that the term gets to the nub of what makes us different. Yes, we could say that we were a cultural minority, and we could argue this on the basis that we have a shared way of communicating, looking at the world etc. but this avoids the central question of what precisely makes us different. If we argue that we are a cultural minority pure and simple then our opponents could easily argue that other cultural minorities don't suffer from a 'personality disorder'. It would be much the same as if gay activists back in the early days of their movement had argued that they were a cultural minority - their opponents would probably have responded with: "Well other minorities don't commit acts of sexual perversion". Instead, they defined themselves according to precisely what made them different - their sexual orientation, thus preventing that kind of argument and insisting on their rights precisely because of the thing that made them different and discriminated against. So it should be the same with us - we should argue that we are a neurological group. Like the gay rights activists, who invented the whole paradigm of the sexual minority (which didn't exist before) we are then creating a new paradigm rather than trying to artificially shoehorn ourselves into an already existing camp, an act which, as I've said, essentially dodges the question as to what makes us different.

BTW I actually think (and I'm expecting to be shot down in flames for this) that we should find a way to relate to the disabled movement rather than reject any identification with it on the basis that we're just not disabled. I say this because, if one accepts the Social Modal of Disability as a socially constructed phenomenon rather than an absolute category, then we aspies are 'disabled' precisely because of society's attitudes to us!
I should point out that many deaf people regard themselves as a linguistic minority (sign language users) and not disabled yet still regard themselves as part of the disabled activists community.

Anyway, have to get back to my work now. I'm working on a voluntary project on physiotherapy for the MS Society.

Cheers

Roderick

Thanks for your comments. It's all a terribly complex debate really. A whole load of issues can arise about how we relate to other activist groups. However, the legal picture about disability is not a straight forward one. If you apply for a job you are often asked "Do you consider yourself to be disabled?" They are asking whether you would consider yourself disabled irrespective of whether social security would in other words. I would consider myself slightly disabled as a result of society's attitudes to people like me. For instance, I was ostracised throughout my childhood &  experienced terrible frustration because I couldn't fit in and didn't know why. Crucially nobody seemed willing to try and understand me or my point of view! As a result it affected my self-confidence for years after. That's why I raised the idea of the Social Model of Disability - this states that disability is not something somebody has, it is what society does to people who are different in some way.

Anyway I'm at work and my break's over so I'll have to dash off. It is a complex debate & I do think we in the autism rights movement need to thrash these things out properly as we will encounter these issues.


Cheers


Roderick

Rosie - I don't see why the NT world are incapable of accepting the idea that there are neurological minorities. After all, the heterosexual world has accepted the existence and right in many cases of sexual minorities. I'm still going for neurological minority because, as I say, it goes directly to what makes us different.


Cheers



Roderick

Not only am I an Aspie, I have an Aspie daughter and 2 Autistic children (it remains to be seen whether/where my fourth child will be on the spectrum).  I am strongly Aspie--it's not mild!--but mercifully learned to take care of myself and to prize my neurological differences in spite of the abuse and misunderstandings and negative labels they caused throughout my childhood and into my adulthood.  

Because of my own experiences, I have a different take on advocacy.  My goal is not homogenization; I educate the NT world (schools, etc.); I teach my children to value/cherish, and therefore advocate for, themselves; I teach them what I've learned about NT culture.  We don't have a choice about living in a world in which we are not the dominant neuroculture; however, we still have to function in that culture while we preserve, protect and promote our own culture!

One of my cultural bridge-building activities is educating groups like our local Autism Society chapter.  I can't (and won't) claim to speak for all Auties & Aspies; I can only share my perspective and give NT parents food for thought.  I wrote the article below for publication in a local ASA newsletter; it gives some thoughts on my cultural paradigm.  I don't have a problem with this article being reprinted as long as credit is given where credit is due.


RESTORATION

It was a private silent retreat. I checked in, explained my situation to the spiritual director, and was then shown my room. The small cell was spartan, as to be expected. I should say, “as to be anticipated”, because it was…to me, it's much more restful and much less distracting that way.

I spent the day walking the grounds. My goal was to utter not a single word. I think in pictures, not words. When I speak, it is as if I am translating every thought into a foreign language, which is tiring.

Thinking in pictures is actually wonderfully rich...an amazing form of shorthand if you will. Last night, I found a website for an uber-think tank that tries to teach people how to think in pictures. The assertion of this reputable organization is that thinking in pictures is a form of superior intelligence and an evolved cognitive process. The examples of Albert Einstein, Thomas Edison, and others were cited. People actually pay $450+ to attend seminars and learn techniques to try to duplicate this way of thinking. Little do they know that they are being taught Autism Spectrum thought!

[Einstein and Edison are believed to have had Asperger's and Autism, respectively. Although those diagnoses didn't exist at that time, by multiple accounts they displayed most of the classic symptoms and behaviors for these syndromes. Edison didn't speak until he was 9. Einstein failed most of his classes in "conventional" education due to poor expressive language, attention deficit, and behaviors which would seem to be indicative of sensory integration dysfunction.]

I spent a few minutes laughing hysterically, but was also pained by the irony. It is both amusing and sad that neurotypical society is trying to “cure” individuals with Asperger's/Autism—in essence, to make them neurotypical—and is at the same time paying vast sums of money to learn how to be like them in at least one way. Those of us on the spectrum could do without the sensory challenges, the non-verbal learning disabilities, and some of the other, more difficult challenges we face; yet many of us have always known we had an evolved way of thinking, and cherish it. It has given us gifts and abilities we would not have if we were neurotypical.

It is vital that we on the Spectrum are able to function optimally--or at least, as effectively as possible--in mainstream neurotypical society, for that is indeed the society in which we live. The importance of this need cannot be overstated. We are a minority culture within that society. Viewing the differences between neurotypicals and those with Asperger's/Autism from a cultural perspective, it all makes a lot more sense. What is a culture, after all, but a peoples’ way of viewing, interpreting, and interacting with the world?

In this country (USA), multiculturalism and diversity are lauded. Those who lack this openness are branded as philistines, prejudiced, or politically incorrect. Acceptance of and equal opportunity for individuals of ALL cultures is mandated by law. No one would dare suggest that any minority ethnicity or culture in this country should be fully assimilated into mainstream Caucasian, Anglocentric culture. There would be riots in the street! Yet, there is a national effort to change those on the Autism Spectrum; to assimilate them into mainstream neurotypical culture and obliterate the unique traits that make them the wonderful people they are.

“Cure Autism now! Stamp it out! Efface it!” seems to be the rallying cry. We are neither a disease to be cured nor a plague to be obliterated. We are a people, a culture. We are a minority, and we often need assistance and support in learning to function as effectively as possible in a foreign culture and society. Let there be a national effort to improve supports for those on the spectrum, to facilitate their interaction and integration with mainstream society via classroom and workplace accommodations, without trying to assimilate them. Let Equal Opportunity, Equal Access, and Equal Rights under the law apply to us, too. We are not disabled; we are differently-abled, and have our own valuable contributions to make to the world and to the melting pot that is American society.

On a familial level, the multicultural paradigm is also necessary. Whether families are Asian-American, African-American, Latino/Hispanic-American, or another wonderful cultural blend, we see more than one culture being embraced within the walls of homes all across America. Yes, we live in America, so outside the home we speak English and function in a society shaped by our American culture. Yet inside the home, one finds a happy chaotic mix of two languages spoken, two cultures understood, two paradigms embraced. The family as a unit is strengthened by this wonderful blend of what either world has to offer. Studies have shown that individuals emerging from a multicultural family are more tolerant, more adept at problem-solving, and better communicators than their monocultural peers.

If only families living with Autism Spectrum Disorders would discover this paradigm! Yes, we live in a neurotypical culture, and our beloved Auties and Aspies need support in order to be able to function as effectively as possible in it. Yet inside the home, can we not embrace both cultures and learn from each one? Can the neurotypical members not look beyond the challenges and learn to see the richness and beauty of difference without condemning it?

Our multicultural paradigm is also crucial to possess if you are an individual on the Spectrum, or if you know and care about someone on the Spectrum. Consider this analogy: If you lived in China, learned to speak Chinese, and functioned well in Chinese society, you would nonetheless be American and a native English speaker. No matter how comfortable you were functioning in Chinese society, you would not be Chinese; all the learning and adaptive skills in the world could not change your genetic composition! If you were then to go home to visit the States and to converse in English, you would feel an immense relief, relaxation, and sense of restoration for being immersed in your native culture and tongue. Daily life would not be as tiring as it was for you in China, expending all that mental effort to integrate. After a time in the States, you would return to China feeling rested, refreshed, and energized.

In much the same way, I find it very restorative when I can shut down verbal language and just be silent and visual. I get a lot more thinking done that way, as I can cut through multiple layers instantaneously and with laser precision. It is really a wonderfully synoptic and efficient way of life. I find my insights and my peace more quickly, and am comforted by brief sabbaticals in my native mode and culture.

This truth is common for many, if not all individuals on the Spectrum, regardless of their degree of impairment. What appears to the neurotypical eye as a few hours or days of unexplainable, periodic regression--or even as mental illness--may in fact simply be “down time” for restoration. Neurotypicals are not the only ones who occasionally need to retreat from the stresses of daily life and “let their hair down” in order to feel restored. All humans need this at regular intervals. Consider that it takes an individual on the Spectrum many times the effort it takes a neurotypical individual to complete basic tasks of living, and it seems quite reasonable that we sometimes need that internal retreat.

Copyright © 2003 D. Thompson, reprinted with permission.

Roderick,

In my personal experience the NT world is incapable of accepting the idea that there are neurological minorities as a function of their neurotypicality; by definition, their neurotypicality prevents their understanding of the neurological minorities that are patently obvious to us.  

In the NT mind, neurological differences = neurological deficiencies.  To an NT, those with neurological differences are DISabled, rather than DIFFERENTLYabled; DEficient rather than PROficient.  

If you are a native English speaker in China, you're not disabled.  You're just at a cultural and socio-linguistic disadvantage.  The same is true of Aspies/Auties in an NT world.  

I personally don't want to be labeled as disabled; however, I don't want to be discriminated against because of my neuro-differences.  I want equal rights under the law as a minority group without judgement being passed on my "ability".

You mentioned the hetero/homosexual divide and the acceptance of sexual minorities by the sexual majority.  Homosexuals may have been the target of discrimination (and still are, I know); however, nobody ever viewed them as mentally deficient because of their sexual orientation. No one ever doubted or discounted the potential for intellectual or social contributions of homosexuals, even when they were discriminated against because of moral/societal judgements.

Yes, it is absolutely our neurology that makes us different.  However, to my view we live on a planet that is not *yet* capable of recognising the equality of neurodifferences.  It's a bit like landing with a human spouse and procreative mate on a planet where reproduction occurs via the touching together of earlobes...they just wouldn't be able to grasp that our method of reproduction is right, let along the zing we get from it  :wink:

This thread is abit old but I thought I might add some information that might be helpful.

At one place where I worked, we were required to fill out a form to indicate our race.  It asked for our name and race and was sent out by the head office in another city.  The reason for it was because the provincial government required that all employers show that they had a workplace that reflected the racial diversity of the community.   Everyone was upset about it.  Most of the workers were immigrants to Canada and really didn't think the head office had any business knowing what their race was.  I just put it off.  I was finally told I had to fill out the questionnaire.

I was very upset.  I decided to call the government agency responsible for this.  I really wanted to know why they wanted this information and what they were going to do with it.  They told me that if the workplace didn't reflect the racial diversity of the community, then the employer might have to hire or contract in workers to match the racial statistics of the community.  Well, our workplace was located in a mostly Chinese neighbourhood.  Most of the people working there were blacks, Indians or white people (I hate to use racial terms).  So that would mean that some of us would have to be fired so the company could hire some Chinese people?  Didn't sound like a good plan to me.  

I then asked the government worker how the government determined someone's race.  They told me that race is "self-determined".  So I could check off any race I wanted.  The government couldn't go around and tell people they were any particular race.  I talked to the supervisor and he told me that when most of them filled out the form they just checked off "other" for their race.    I did the same.   It didn't have "human" on it.

The problem with Asperger's being defined as a disability is that I would need a doctor's assessment to have any recognition.  A minority sounds good to me because then it is "self-defined".  So when I say I am "self-defined" Aspergian it is different than saying I am "self-diagnosed" with Asperger's syndrome.  And then I don't have to pass some doctor's test (which will have parameters to squeeze some affected people out).

Other people can try to classify your race.  People might look at my husband and say "you're a south-east Asian".  My husband is a Canadian citizen.  He wasn't born in Canada.  His ancestry is mixed so I wouldn't want to just put him into one race or another.  I don't think he really cares about race anyway.  The option to regard himself as a minority is there if he decides it can be there as an advantage/protection to him.  Other people's decisions about his race can be the source of his problems if they are racists.  

So now I am starting to understand why people might not want to consider being an Aspie like a disability.  I don't need genetic testing to prove what I want to be "self-defined" as a human.  I don't need it for my racial identity.  I guess I don't need it for my neurodiversity either.  I prefer to be "self-defined".

The big problem then is how does an aspie know when someone is denying him rights and expresses prejudice against his because of his "self-definition" as a minority.  I guess then the aspie making a complaint must bear the burden of proof.  I couldn't honestly know why someone hates me unless they told me "I hate you because you are an aspie".  

I have to stop know because I am getting really confused.

It can also be observed that people with physical disabilities are discriminated in employment even though they have the protection of laws.  If someone has a job already and becomes physically disabled due to injury or illness they can't be fired if they come back to work and can still do their job.  Their workplace might be ordered to accomodate their wheelchair etc.  How the physically disabled are also discriminated against is in finding work.  Some jobs descriptions will say that the job requires lifting of 20 kg or ability to stand on their feet for hours.  Some workplaces can be modified for someone who can't stand or lift but employers just will not do that because there is no shortage of labour and because of costs involved.  I have no problem with being waited on in a store by someone in wheelchair, I have just never seen that.  So then if someone claims to the court they are being discriminated against and it would be quite obvious when they arrived in the court that they were disabled.

Deaf people and some blind people claim that their disabilities often appear invisible to most people.  This causes them many problems.  I find my problems dealing with people's intentions/meaning/facial expressions to be invisible to people as well.  What social skills I am lacking, I have tried very hard in trying to compensate for.  Just as someone with low vision can only compensate so much with visual aids, there are limits to their visual perceptions.  If I can't fix my empathy and can compensate only to a certain limit for that, I need some help.  I can't get that help if my problem isn't considered to be existent.    

Trust is an issue.  My grandmother was blind.  She had very very low vision.  She could see shadow and light, that's it.  (I have another friend who is legally blind.  He can use an enlarging computer at work.  He is not allowed to drive a car.  He uses a bicycle for transportation.)  My grandmother had to rely on using volunteers to read her mail, help her with daily things like banking.  She would have to walk into a store and ask the store clerks to tell her what denomination the bank notes were.  She had poor touch sensation in her fingers so she couldn't use braille.  So while a person may be considered blind there are great variablities in every disability and what limits there are to compensate for.   For what she couldn't compensate for, she had to trust.  

It is very difficult for someone with AS to trust.  Alot of the problem is that we trust too much or don't know when to trust.  I am constantly feeling abused because I am trusting people who take advantage of me.  If I totally mistrust everyone then I am severely limiting my interactions with others.  I really want to get help with what I can not compensate for.  I am just at a loss to understand exactly where my limitations are.

Lili Marlene, I can see your point about being careful about disclosing my condition.

I work for a government department and was going to get edged out because of being terrified of answering phone enquiries where I didn't think I knew enough to help the callers. Having been diagnosed with a recognised disability (at least in Aust), I now have a bit more protection against being arbitrarily dismissed.

It took years of knowing something was the matter with me but never getting any definitive answers. At least with an official diagnosis, I now know I am not mentally defective or mentally ill and can find my place in life. It will still be a struggle sometimes as I also have been diagnosed with dysthymia (a persistent low level depressive state). This dual diagnosis is not uncommon for AS people.

Lili Marlene, it used to be the case that if people in my department were not good at a particular job but good at something else, efforts would be made to accommodate them.

For that reason, I didn't have quite so much trouble in the earlier years of being employed in the department. If I was under a manager and we didn't get on (some were jealous that I was brighter than them even though I'm sure I never tried to act superior in any way), then I could get moved to a different team if I spoke to the union.

For the past 5 years though, the range of tasks and placements has been much more restricted as instead of having a wide variety of tasks in each office, they have been consolidated into a few or even one site, causing massive dislocations at times.

I'm probably one of the few Aspies who survived but it was at the cost of a lot of personal heartbreak and unhappiness. A lot of other people in the same situation including NT's just quit when all the changes happened that they weren't consulted about.

Even the union rep in the end said I'd probably just have to leave but this was before I got a diagnosis. I actually found the union rep to be very two-faced, saying they were acting in my best interests, but actually siding with management. I don't talk to her any more. She puts politics in front of the union members' interests and I know quite a few others who've observed the same thing.

Unfortunately, the new Industrial Relations laws in Australia will probably pass soon and that means fewer safeguards for people like us.

Lili Marlene, the only way I could get a diagnosis in the end was to be referred to the Commonwealth Medical Officer after what was described as "disturbing behaviour within the workplace". Then I was referred to a pyschiatrist who'd studied in New Zealand and he picked up that I had Aspergers within 5 minutes or so.

I'm very cross that it had to come to that because some people at work give me funny looks and it's obvious to me that I was just expected to leave after the bad supervisor's reports I got after the 2nd referral to the CMO about 12 months after the first.

I had a boss who bullied me quite a lot, allowed other people to make offensive comments and kept on spying over my shoulder. I ended up getting a mirror on my desk so I could see her coming.

Luckily, I then had 2 good bosses in a row and have some friends at work. I've helped two depressed people with information about depression as that is something I have quite often. I want to help other people so they don't have to suffer the same way that I did.

I often prefer animals to people because animals don't judge you and you can talk to them without getting into an argument.

I don't mind being friendly with some of my colleagues during tea breaks but never liked going to pubs for a drink - too smelly with all that cigarette smoke and too boring. I think I could have coped with the boredom to some degree but I hate going places that are very stinky.

One of my daughters is studying forensic psychology and that is a field I would be interested in too.

I suppose women with autism would qualify as a minority group, though.

And if not at school, what about after you left school?