AB&C: Autism Bickering & Confusion. As someone with Aspergers Syndrome in my life (but not controlling my life), I have taken an interest in the various discussions going on in newspapers, magazines, books and on the web regarding this condition’s relationship to autism. As a whole, the field of psychology now classifies Aspergers as an “Autism Spectrum Disorder”. Researchers seem to feel that Aspies substantially share the same set of environmental and genetic circumstances that cause what some call “classic autism”, i.e. where the person cannot function independently and experiences severe learning and behavioral disabilities along with social deficits. According to the psychology “mainstream” view, the difference between an Aspie who is the president of a successful computer software company and an institutionalized adult with an IQ of 60 who can hardly speak, wears diapers and bangs his head at the wall, is mostly a matter of degree along this spectrum.
Admittedly, I am not qualified to give an authoritative answer on this. I don’t know anyone with classic autism, although a woman at work who sits a few cubicles away from me has an institutionalized 35 year old son with autism. I overhear many of the details of her relationship with him. I have read that the psychologists and neuroscientists are not unanimous about the “spectral view”; some see significant differences in the brain structures and environmental patterns of Aspies versus “classic autistics”. I do know from surfing the web that putting Aspergers in the “autism ship” has caused disagreements and bickering between parents with autistic children, advocates for research and therapy, and people who themselves claim to have either Aspergers or high-functioning autism. (Obviously, people who are “lower” on the spectrum cannot voice their thoughts on this).
If I’m getting it right, there are several camps. First, there are the Aspies who embrace the autistic categorization and call for what is called “neurodiversity”. This viewpoint in effect asserts that the world needs to give autistic people a break, i.e. be more open minded to their quirks and differences. It’s another variant of a civil rights movement. It says that autistics should not be looked at using a “pathological” model.
Next, there are the autistic advocates who argue against neurodiversity. It’s not that they don’t want Aspies to be welcomed and better understood by the public; it’s just that they feel that the Aspie crowd is stealing the political spotlight from them and their own needs. The Aspie crowd are the new kids on the block; whereas the relatives of classic autistics have lived in the proverbial neighborhood for a long time. They want more public funding for research and treatment for those suffering significant impairment from autism. They want a cure, not public sympathy. They realize that neurodiversity can happen on the cheap; genetic therapy for autistic infants cannot. One of the most noted proponents of this view is Len Schafer.
(Oh, there are also the “mercury people”, mostly parents of autistic children who want to believe, despite many scientific studies to the contrary, that autism is caused by mercury preservatives in vaccines. I won’t touch that one, since I don’t have children at all and certainly know nothing of what it would be like to have an autistic child.)
In response to Schafer and his like, some Aspie-neurodiversity people (e.g. Michael John Carley) have expressed sympathy (but not agreement) with those who want a cure for autism. The “old time autism” advocates nonetheless remain wary, convinced that all of the neurodiversity people are dead set against a cure for autism. The old-timers also seem to wonder whether Aspies would still care about low-functioning autistics once they receive their tokens of public recognition and acceptance.
There’s an interesting and related side effect from the increased attention that Aspergers Syndrome has drawn over the past few years. A lot of people have produced books, articles, web sites and videos proclaiming themselves to be Aspies and telling of their great relief now that they know “what’s wrong with them”, i.e. why they never seem to fit in with the world around them. Some of them have not been professionally diagnosed by a shrink. (Hey, I guess that includes me!). “Self DX-ing” is fairly common and generally accepted in the “Aspie community”. But there is a reaction brewing amidst the more cynical members of the public, i.e. that many self DX-ers (and even those with a shrink’s opinion) are often “slackers” and “whiners”. They’re just people looking for an excuse, just looking to justify their own failings. They just don’t want to do the work needed to be successful in this world. They’re almost as bad as the proverbial “welfare queens” of the inner city.
Interestingly, some of this reaction comes from those who clearly do suffer from “classical” autistic deficits or from those who take care of such people (e.g., parents). They send e-mails saying “you don’t have autism or Aspergers”. And in response, those accused of “slacking” publish their justifications, listing their autistic “credentials” and explaining how they’ve “paid their dues”. One interesting example is from a woman named Rudy Simone, a self-DX’d author of various books on AS. Ms. Simone recently put out a YouTube video presenting her own such ‘apologia’. Quite interesting.
As for me, here’s where I stand. I may well have Aspergers in my life, but Aspergers does not RUN my life. It could explain some things about me, but it doesn’t remove any of the responsibility that I will take for what has happened and for what is yet to happen in my life. I’m still at the wheel; I’ll take all of the blame and any of the praise (if there is any to be had from this skeptical world!). If anything, knowing about Aspergers and how it influenced my life gives me increased opportunity to use the rest of my life in a positive fashion. And it doesn’t take away any responsibility for what has already occurred. I can’t say that learning about Aspergers was a total surprise to me. My second grade teacher, Mrs. LaGreca, told both me and my parents that I was “different” (but not different enough to be put in special ed). Some older guys that I knew on the railroad back when I was 16 said just about the same thing. But they said that I had a “good difference”, i.e. I was more responsible and intelligent than most kids, if a bit weirder.
I am discussing Aspergers on my blog now, but I’m not asking for pity. I’m just putting out some thoughts that others might find interesting, and hopefully useful.
Next, as to whether I think that I myself should be considered “on the autistic spectrum”. Again, I’m not qualified to talk as a professional researcher or therapist. BUT, something about it doesn’t feel right to me. Perhaps there are genetic and environmental similaritie
s between me and my co-worker’s institutionalized son, which are of interest to the taxonomists within the psychological field. But in daily life, in the world of politics and laws and customs and social rituals – I think it’s a bad fit. Allison Singer also seems to have her doubts.
Perhaps this makes me a renegade from political correctness. If so, then so be it. I am not trying to throw shadows on those like my co-worker’s son. But given what my co-worker has gone through in her life, given all the angst she suffers regarding her son, I would love to see a cure for him. I am not afraid that the availability of such a cure would have hypothetically altered my life and my personality (especially since there probably will never be a true cure for a complex genetic condition like autism, just a number of ways to mitigate its more debilitating aspects; i.e., severe autistics might be made more like Aspies).
As to “neurodiversity rights” for those who have good minds but don’t have such good social sense; perhaps greater public awareness and acceptance would help. I realize that there are many Aspies who are living messed-up lives, people who can’t hold a job and can’t make friends or fall in love. I believe that our society should try to be kinder and gentler to everyone; I think there should be more understanding and compassion. BUT, I will admit that skepticism can also be healthy; people do get lazy and whiny sometimes, and need a little “cruel to be kind”. We do need standards. As with everything else in this world, it’s a question of finding the right balance. The whole Aspergers thing is a relatively new item on the public agenda, and it will indeed take a while to strike that balance.
But I think that balance will best be struck if Aspergers and neurodiversity is uncoupled from classic autism, and the “spectrum” is sent back to the ivory towers of psychological academia, from whence it sprung.
Jim,
My first reaction to what you write is (and I mean these questions as rhetorical): Why must a person always fit into society’s preconceived idea of what a “normal” person is. Why can’t a person just be who he/she is and let it go at that—as long as he/she is no harm to him/herself or the rest of society. Everyone needs someone to love him/her, so why can’t people simply be accepted for who they are and let it go at that.
But a little more on your comments because it seems there is nothing new under the sun. Specifically: The discussion as you describe it reminds me mightily of the discussion back in the 1970s and 1980s of schizophrenia and the people so diagnosed. Schizophrenia is somewhat as you describe the so-called autism-Asperger’s spectrum in that people can be more or less affected by the condition. Some people are more schizophrenic, unable to function at all in any kind of life without being harmful in some way(s) to themselves or others, while other schizophrenics are more or less functional. Some tend to live homeless lives and are barely functional in what is considered a “normal” life; others tend to be very “eccentric”, perhaps “dumpster diving” for food, etc. These may simply be disruptive to the normal lives their family members may try to live and should probably be allowed to live as they would prefer to live. Others may be unable to take care of themselves and others they may be responsible for, such as their children (care for them in fitful ways, if at all) etc.
There was a “faction” lead by R.D. Laing some 30 or 40 years ago (if one might call the group that) who thought then that people who were schizophrenic should simply be allowed to live their lives, however they chose to live them. A good theory in some ways; yet in other ways a good theory only in theory. Too many times for Laing the fact was that in practical life, living with such individuals who were disruptive of their own lives or others’ lives became almost impossible for almost everyone not schizophrenic who had to live with them. (For a good description of what I mean here see The Glass Castle by Jeannette Walls. Walls’ mother particularly might easily be classed among the schizophrenics who were not harmful to themselves but who certainly had little ability to care for her children. Her father may have had other problems than schizophrenia.)
While individuals who must deal with those severely afflicted by the condition (or those who have to live with schizophrenics who are perhaps described as extremely eccentric) spend every waking moment trying to cope with those so affected, there is a distinction to be made between those severely affected by the condition and those who should not be so diagnosed and who may not deserve the diagnosis at all; these individuals likely fall into an entirely different category.
If I may then apply the analogy I’m trying to make here to your own situation as you describe it: “My second grade teacher, Mrs. LaGreca, told both me and my parents that I was “different” (but not different enough to be put in special ed). Some older guys that I knew on the railroad back when I was 16 said just about the same thing. But they said that I had a ‘good difference’, i.e. I was more responsible and intelligent than most kids, if a bit weirder.”
(Continued below)
MCS
Comment by MCS — January 12, 2010 @ 11:05 am
(Continued from above)
Frankly, it is precisely the last word that makes me say, just let people be who they are. Clearly, you did not fall into the group on the so-called Autism-Asperger’s spectrum that caused those you lived with to be forced to disrupt their lives in any serious way trying to cope with you. I certainly would say then why should you be “classified” at all in any “spectrum” whatsoever. Why must an individual conform to the concept of “normal” others prescribe. Clearly, others described you as “good”—presumably meaning you did not disrupt their lives and more likely you made positive contributions to their lives. In such a situation I say let people be as they are; take them the way they are and accept them as they are. Positive contributions come from all kinds of people. Why must they be “classified” or “diagnosed”; it makes no sense to me. I say such individuals who people regard as “good” should be celebrated for being in the world and making a positive contribution. No “classifications” or “diagnoses” are needed. I say accept yourself for who you are, appreciate who you are, and let it go at that. No need for “diagnoses.”
In short, I say there is a needless tendency to have an answer for everything when sometimes there is no answer required. Sometimes people are just who they are and should be left to be who they are, allowed to make the positive contributions they make to their own lives, to others’ lives, and to society in general.
MCS
Comment by MCS — January 12, 2010 @ 11:05 am
I have met outright whiners, people who scream at high decibel levels in their blogs or videos or petitions for money so they can live better etc and they cite ALL kinds of excuses why they cannot do so without the help that THEY WANT.
I have also gone on and on and on myself obsessing over the one major issue that I myself have been unable to figure out – relational. That my own rantings may come across as whining and moaning self pity dramatisations I am very aware of. But contrary to how things may sound to others, my ramblings are usually direct verbalisations of my thoughts at the moment and not asking for sympathy or money or whatnot. I don't want sympathy – I seek REAL solutions. I am constantly rolling thing in my mind, in between the agonised depressive suicidal whatever else off balanced thoughts, HOW to map things out better and achieve the same high level of control over this area of my life as I seem to have achieved over all other areas of my life.
Am I making sense? Probably not. But anyway, yes there are many false prophets out there, and bogus claims for sympathy – not just in the Aspie community but all those with some form of disability or difference. Does it not boil down to human nature once more, to be the "calimero" ?
Your thoughts are interesting to me. They are generating more thoughts in me. Is this good or bad? I have no idea. I am an aspie chick who has a compulsion for too much thought. :-)
Thanks!
Comment by spunkykitty — February 10, 2010 @ 10:16 pm
As much stuff is being said about this subject, all I can say is here here to all three thoughts. I have studied much of the health science at home while I sit, not being able to do anything for myself. I’ve even looked deeply into the schizophrenic community, and have most certainly been moved by how hard the lower parts of both spectrums have suffered, and those who have suffered from those who suffered from autism or schizophrenia. I’ve found myself more of a disruption than the average aspie though, in regards to what I believe is a misdiagnosis of a horde of disorders. Not knowing how harmful it was for me to drag my entire family into my main interests, whatever they may be at the time, even my online friends and what little friends I have in person. I’ve finally opened my eyes, and I too am looking for the true path to a life of less pain, a life of less hypersensitivities, no more social blindness, not being able to understand the non-verbal communication I now force myself to see. Even yet more, I’m working on the CFS diagnosis, but along with my psych eval of finding the Aspergers I so see in myself, and others have seen indirectly (comments relating to symptoms (un)official to aspergers, like how I always talk about solid state drives and over and over and over again), I’m not even sure if I could be classified to HFA, so I just sit waiting, knowing I will soon live a better life when pushed in the finally right direction. But while I suffer in pain, hypersensitivity, inability to think on my feet, I can certainly not sit idle. I have to DO something. So while I’m waiting, I’m plotting my goals in life, the goals I never could make without knowing how I truly am. But soon I will not have to sit so idle. I can’t wait to go to college and conquer my entirely impossible goal of learning quite a lot about the world and it’s science, maybe conquer the universe while I’m at it.
Pretty random commentation (lol is that even a word?), but “here, here!” to you guys!
There’s much about this world than just aspies who are on the move for a life of liberty and the pursuit of happiness. Maybe be fun for you too to look into how prohibition laws are affecting our life. Or how pharmaceutical companies are as well, and how they have a role in prohibitions. Quite interesting stuff. Almost taboo just like Aspergers sort of is, but both are becoming recognized, informative, and people are finally opening their eyes.
Love much,
An aspie who wants the best for everyone and not just herself.
Comment by Kelpie — February 9, 2011 @ 12:46 am
Thanks much, Kelpie. You sound quite positive and goal-oriented. Socrates said that rule #1 (the “prime directive” back before Star Trek ?) is to “know thyself”. It sounds like you’re doing a great job with that, and I’m sure it will eventually work to your benefit, versus the billions of neuronormals who pretty much take themselves for granted, even when they’re all messed up and doing awful things. Solid state circuitry? Nothing wrong with that. Get to college, keep on believing in yourself, and it’s going to be good. It’s very good to find out what you do or don’t “have” in terms of DSM IV or whatever, but at the end of the day, you are you. It sounds like you are basically in control (versus those autistics or schizos who, unfortunately, are not really behind their own driver’s wheel). So keep the faith and — gotta say it — live long and prosper!
Comment by Jim G — February 14, 2011 @ 8:40 pm