I was going to comment about the Alabama killings and the recent real/continuation IRA shootings but something even worse has occurred in Germany a country one does not normally associate with such random shootouts.
Before this I was speculating as to what the difference (if any) there is between the murder of two soldiers and a policeman by Irish Terrorists, the crazed shooting spree of the US "Mall shooter" and the shootings at the Sri Lankan Cricket team in Lahore.
I thought is the difference in the motivation or what? One kind of shooting is clearly political (even if misguided by the usual standards of morality) and the other is usually a grudge shooting of some kind.
And then I thought, no there is no difference in the motivation, it is all grudge shooting, a hatred of someone, one has never met, who is either percieved to have done one wrong, or who belongs to a class who has done one wrong. It all stems from hatred and an overfamiliarity with firearms.
It is a wonder sometimes that the petty warfare in this blogosphere does not end up that way given the same motivations of hatred and prejudice I see in some postings.
I am not even immune to it myself, for instance what I personally think about the guy who claims he would rather have his children die of Cancer than live with Autism. God may forgive him but I find it hard to.
Hey WTF? that is the same fanatical thinking that equates in my mind to terrorism. You there fanatic author, would you rather your kids died in a Mall, or a school shootout too?
This is the real madness in this world.
Wednesday, March 11, 2009
Monday, March 02, 2009
Clumsy definitions of disability
It occurred to me whilst shaving with one of those multi blade disposable razors whether that was ethical at all, given how few shaves one gets out of them, and the amount of steel and plastic they must use up. Granted they use less steel than the contraptions my father used, but still was there an acceptable alternative. (my annoyance was in part, how easily these razors become clogged with bristles as well if one has skipped shaving the day before)
The alternative is of course the aptly named 'cut throat' razor and I cannot imagine how our forefathers managed to 'hack it' with such a dangerous appliance. Now as you might have guessed, I am clumsy, there is no way I could use one of those things safely.
Following my train of thought, I considered. What if steel and plastic were so scarce that the government banned disposable razors (as indeed incandescent light bulbs are being increasingly banned) Someone like myself would probably need a medical exemption to continue using one, and these devices would become rarer, more expensive and available at the chemists by prescription only.
I could then see and epidemic of dyspraxia diagnoses, as every post pubescent boy struggling with a cut throat razor, was taken by his parents for the magic “label” that would allow him to be spared the rigours of continual sticking plaster around his gills.
Safety razors would become as hot a property as an illicit shot of Ritalin.
Now that is not to say that my clumsiness is not of an order that is well below the usual two standard deviations from the norm, that tends to be a rule of thumb dividing line between a disorder and natural variance. Someone always has to come at the far end of any bell curve else it would not be a 'natural distribution' if it had vertical sides.
However we can also look at natural variance in eyesight. One can well argue that ones visual acuity is as much a medical issue, as ones physical co-ordination, indeed sometimes the two are linked. However one does not need the services of a Dr or a formal diagnosis for one, in order to go to an optometrist to get the accommodations one needs. True there are fewer options available once one exceeds a particular dioptre strength (as I found when trying to get prescription swimming goggles, they mostly cater for a range of about one standard deviation from the norm) but nonetheless one does not usually go to the hospital to be fitted with high strength lenses. Glasses are considered a social norm, a fashion item even, and nobody thinks about an underlying epidemic in the increasing numbers of people who wear them, or contact lenses. No instead one looks to changing social patterns as an explanation given the higher literacy rates, and greater demands upon vision that a technological society makes.
Where is all this leading. Well Neuro diversity is something that encompasses “dyspraxia” as well as autism and adhd. It also encompasses dyslexia, that other emergent product of the demand for higher literacy.
Now I was not diagnosed as dyspraxic or dyslexic by a GP or a hospital consultant anymore than I was prescribed glasses by one, I was diagnosed by a dyslexic specialist, outside of the health service.
When it comes to anything on the autistic spectrum, be that PDDNos, Aspergers or Autistic “Disorder” (to use the DSM categories) one requires to go through the medical route, but why?
Psychiatrists are often ill experienced and ill trained to diagnose anything other than a particular set of mood disorders, psychoses and personality 'disorders' and in the strong evidence of something secondary presenting more strongly than the autism they won’t see it.
On the other hand paediatricians are seeing more autism, but again why?
Is it because Autism confers a perceived social advantage in a highly competitive educational arena that parents and paediatricians are getting hip to the autism jive? More so than the psychiatrists amongst whom there is not this pressure to learn about autism as they do not expect to see it much amongst there adult patients?
Is this an example of the rule that can be derived from my razor example?
To put it simply, autism does exist, as a set of neurological differences, as real as those that underlie dyslexia and dyspraxia (which are equally complex conditions when one unravels them) however it exists as a natural distribution and the way it is diagnosed and the numbers are socially defined and shifting over time. Autism has it’s own bell curve and the pressure is now there diagnose those two standard deviations on the far side of the bell curve as well as those on its 'severe'end whilst the majority falls within the middle.
I can hear those parents whose children fall at one end of the bell curve protesting, the epidemic as if all the diagnoses are coming from that end. Well they are not, it is a bell curve and not skewed at the bottom, that diagnostic prevalence toward a low IQ construction of autism is falling away because of those social diagnostic shifts.
I asked a rhetorical question in an earlier blog as to whether I am autistic. Well it seems most people in the know would comfortably diagnose me in there. However that does not make me necessarily less autistic than these straw men arguments put up to justify continuing denial of rights to so called lower functioning autistics. It does mean that so far as my IQ goes I am on the far side of the bell curve (OK I admit it) but that is yet another bell curve, a natural distribution that will cut across practically any 'disability' you care to mention, and the consequences are always going to be more difficult if you have less intellectual capacity to spare, to problem solve for yourself, be that if you have arthritis, or are Deaf. Deafness is the great example again, at one time Deaf people were considered automatically “retarded” because of the importance that psychology put upon language for the formation of concepts and ideas, in those dark days.
Who would deny that an intelligent Deaf person had the right to speak as an advocate for the rights of Deaf People, across the now notorious bell curve? Well you might if you were a hearing parent of a Deaf child, full of the standard societal notions of how important oralism is, and what an imposture sign language is. You see there is nothing unique about Autism so far as it fits within the social constructions and appreciations of Disability at all.
Please note that comments are only open for sensible debate. Fanatics who have no intention of ever changing there position on this, people who denigrate each other in the argument by calling there opponents had better keep fighting your Troll wars somewhere else as I don’t want to insult the readership of this blog by exposing them to the scatological level to which debate has descended elsewhere. So keep it polite please.
The alternative is of course the aptly named 'cut throat' razor and I cannot imagine how our forefathers managed to 'hack it' with such a dangerous appliance. Now as you might have guessed, I am clumsy, there is no way I could use one of those things safely.
Following my train of thought, I considered. What if steel and plastic were so scarce that the government banned disposable razors (as indeed incandescent light bulbs are being increasingly banned) Someone like myself would probably need a medical exemption to continue using one, and these devices would become rarer, more expensive and available at the chemists by prescription only.
I could then see and epidemic of dyspraxia diagnoses, as every post pubescent boy struggling with a cut throat razor, was taken by his parents for the magic “label” that would allow him to be spared the rigours of continual sticking plaster around his gills.
Safety razors would become as hot a property as an illicit shot of Ritalin.
Now that is not to say that my clumsiness is not of an order that is well below the usual two standard deviations from the norm, that tends to be a rule of thumb dividing line between a disorder and natural variance. Someone always has to come at the far end of any bell curve else it would not be a 'natural distribution' if it had vertical sides.
However we can also look at natural variance in eyesight. One can well argue that ones visual acuity is as much a medical issue, as ones physical co-ordination, indeed sometimes the two are linked. However one does not need the services of a Dr or a formal diagnosis for one, in order to go to an optometrist to get the accommodations one needs. True there are fewer options available once one exceeds a particular dioptre strength (as I found when trying to get prescription swimming goggles, they mostly cater for a range of about one standard deviation from the norm) but nonetheless one does not usually go to the hospital to be fitted with high strength lenses. Glasses are considered a social norm, a fashion item even, and nobody thinks about an underlying epidemic in the increasing numbers of people who wear them, or contact lenses. No instead one looks to changing social patterns as an explanation given the higher literacy rates, and greater demands upon vision that a technological society makes.
Where is all this leading. Well Neuro diversity is something that encompasses “dyspraxia” as well as autism and adhd. It also encompasses dyslexia, that other emergent product of the demand for higher literacy.
Now I was not diagnosed as dyspraxic or dyslexic by a GP or a hospital consultant anymore than I was prescribed glasses by one, I was diagnosed by a dyslexic specialist, outside of the health service.
When it comes to anything on the autistic spectrum, be that PDDNos, Aspergers or Autistic “Disorder” (to use the DSM categories) one requires to go through the medical route, but why?
Psychiatrists are often ill experienced and ill trained to diagnose anything other than a particular set of mood disorders, psychoses and personality 'disorders' and in the strong evidence of something secondary presenting more strongly than the autism they won’t see it.
On the other hand paediatricians are seeing more autism, but again why?
Is it because Autism confers a perceived social advantage in a highly competitive educational arena that parents and paediatricians are getting hip to the autism jive? More so than the psychiatrists amongst whom there is not this pressure to learn about autism as they do not expect to see it much amongst there adult patients?
Is this an example of the rule that can be derived from my razor example?
To put it simply, autism does exist, as a set of neurological differences, as real as those that underlie dyslexia and dyspraxia (which are equally complex conditions when one unravels them) however it exists as a natural distribution and the way it is diagnosed and the numbers are socially defined and shifting over time. Autism has it’s own bell curve and the pressure is now there diagnose those two standard deviations on the far side of the bell curve as well as those on its 'severe'end whilst the majority falls within the middle.
I can hear those parents whose children fall at one end of the bell curve protesting, the epidemic as if all the diagnoses are coming from that end. Well they are not, it is a bell curve and not skewed at the bottom, that diagnostic prevalence toward a low IQ construction of autism is falling away because of those social diagnostic shifts.
I asked a rhetorical question in an earlier blog as to whether I am autistic. Well it seems most people in the know would comfortably diagnose me in there. However that does not make me necessarily less autistic than these straw men arguments put up to justify continuing denial of rights to so called lower functioning autistics. It does mean that so far as my IQ goes I am on the far side of the bell curve (OK I admit it) but that is yet another bell curve, a natural distribution that will cut across practically any 'disability' you care to mention, and the consequences are always going to be more difficult if you have less intellectual capacity to spare, to problem solve for yourself, be that if you have arthritis, or are Deaf. Deafness is the great example again, at one time Deaf people were considered automatically “retarded” because of the importance that psychology put upon language for the formation of concepts and ideas, in those dark days.
Who would deny that an intelligent Deaf person had the right to speak as an advocate for the rights of Deaf People, across the now notorious bell curve? Well you might if you were a hearing parent of a Deaf child, full of the standard societal notions of how important oralism is, and what an imposture sign language is. You see there is nothing unique about Autism so far as it fits within the social constructions and appreciations of Disability at all.
Please note that comments are only open for sensible debate. Fanatics who have no intention of ever changing there position on this, people who denigrate each other in the argument by calling there opponents had better keep fighting your Troll wars somewhere else as I don’t want to insult the readership of this blog by exposing them to the scatological level to which debate has descended elsewhere. So keep it polite please.
Saturday, February 28, 2009
Autscape 2009 Call for proposals
We wish to explore these key concepts of autistic being in many different fashions. This can be through formal presentations or workshops, and may be theoretical or practical. Many different types of input are welcome: traditional lectures, creative expression, physical activity, interactive workshops and more.
____ Audience _________________________________________________
Although we welcome non-autistic professionals and family members, the aim of this event is primarily for autistic people, not about us!
Workshops geared towards parents and professionals may be accepted, but must be positive in their support for autistic people and their right to be different.
____ Examples _________________________________________________
For some examples of what has been presented at Autscape in the past, see last year's presentations at:
http://www.autscape.org/archive/2008/presentations
We are also likely to enjoy similar workshops to those that have been presented at Autreat, in the USA. See: http://www.ani.ac/
____ Non-verbal workshops _____________________________________
Although many of the autistic people who are attracted to an event such as Autscape are highly verbal, others may have difficulty with an event so centered around language. However, we want to welcome and fully include all kinds of autistic people, including less 'wordy' ones. We are also seeking workshops which are not primarily focused on the spoken word. (Presenters may still use speech; it is just not the main content of this type of workshop.) Examples: dance, relaxation, music, art, construction of some kind. These workshops are different from casual leisure sessions in that they have more structure, preparation (from the presenter), relevance to autism and the event's theme, and duration.
____ A few notes of caution ___________________________________
* Cures:
Workshops about curing or preventing autism are likely not to go over well at all and are best avoided altogether, unless it is from an advocacy standpoint.
* Problems:
The problems of non-autistics coping with autistic people could inadvertently reinforce negative attitudes.
* Personal Experience:
We all have personal experience of autism. If your presentation is primarily based on your personal experience, think carefully about its relevance here; the story needs to be one which can help attendees to find new understanding of their own situation. Please let us know what you're hoping those present will gain from your presentation.
* Suitability:
Every workshop, no matter who it is targeted towards, should be suitable for autistic people to attend without feeling objectified or put down.
____ What do we expect from you? ______________________________
* Attendance:
If you submit a proposal, we do expect you to be there! Please be prepared to attend Autscape and give your presentation on the day and time scheduled. If you choose not to attend Autscape for the whole 3 days we will do our best to fit the schedule around your needs.
Travel is the responsibility of each individual presenter. We cannot subsidise travel or off-site expenses for anyone. If your proposal is accepted, we will send you a formal letter of invitation if this will help you to secure your own funding.
* Discussion groups:
Presenters may be expected to run an evening or afternoon discussion group on their topic, for those who would like to explore the issue further. If you may have problems with this, we will try to find a volunteer to help you.
* An article:
We would like an article about your presentation for inclusion in a proceedings booklet to be prepared and printed at a later date. This booklet will be sold to raise funds for Autscape.
* Presentation materials:
Please send copies of any handouts and computer presentations (e.g.
powerpoint) ahead of time. These will be made available for download by Autscape participants and printing for those who require it.
* Archive:
We would like to include your presentation summary, biography and any electronic handouts you provided in our website's archive area.
* Recording:
Please allow us to video or otherwise record your presentation. These records may be made available to others by Autscape. If you submit a proposal we will assume you are happy with these expectations. If you have any questions or objections, please let us know so we can discuss it.
____ What can you expect from us? _____________________________
* Attendance:
Presenters will be accommodated on-site for the day of their presentation including the night before or after. Only one place can be subsidised for each presentation, regardless of the number of presenters. Unfortunately, due to the funding situation we cannot offer free attendance at all of Autscape this year.
* Participation:
Whenever you are not presenting you can enjoy the event, including other workshops and the setting, just as any other participant.
* Involvement:
One thing you can expect by joining us is the opportunity to shape an emerging self-advocacy event and autistic community. There will be opportunities at the event to get involved in the future of Autscape.
* Audience:
A rare opportunity to be heard by a significant number of autistic people. A chance to have some influence and get some feedback from the people who matter most in the field of autism.
____ How to submit your proposal ______________________________
To submit your proposal, please use one of the following:
* online form: http://www.autscape.org/proposals/proposalform
* e-mail: info@autscape.org
* or post to: Autscape, 4 Falcon Street, London, E13 8DE, UK
All proposals must be received by 1 May 2009.
Please include the following information.
1. ABOUT YOU
a. Name
b. Country
c. At least one of:
o e-mail address (preferred)
o phone number
o postal address
d. Experience (A summary of your relevant experience, including
any presentations or other education/advocacy activities
elsewhere, and the nature of your interest in autism and/or in
general disability issues.)
2. INFORMATION FOR THE PROGRAMME
a. Your name or alias (for public use)
b. Biography (50-150 words)
c. Presentation title (1-12 words)
d. Summary (100-200 words)
3. ABOUT YOUR PRESENTATION
a. Type of session (choose one)
o Lecture (audience mostly listens)
o Workshop (audience participates verbally)
o Hands-On (audience participate physically)
o Other (please describe)
b. How does your presentation relate to this year's theme
'Effective Living'?
c. Please describe your presentation or activity for the decision makers.
4. Other comments not addressed above
(end)
____ Audience _________________________________________________
Although we welcome non-autistic professionals and family members, the aim of this event is primarily for autistic people, not about us!
Workshops geared towards parents and professionals may be accepted, but must be positive in their support for autistic people and their right to be different.
____ Examples _________________________________________________
For some examples of what has been presented at Autscape in the past, see last year's presentations at:
http://www.autscape.org/archive/2008/presentations
We are also likely to enjoy similar workshops to those that have been presented at Autreat, in the USA. See: http://www.ani.ac/
____ Non-verbal workshops _____________________________________
Although many of the autistic people who are attracted to an event such as Autscape are highly verbal, others may have difficulty with an event so centered around language. However, we want to welcome and fully include all kinds of autistic people, including less 'wordy' ones. We are also seeking workshops which are not primarily focused on the spoken word. (Presenters may still use speech; it is just not the main content of this type of workshop.) Examples: dance, relaxation, music, art, construction of some kind. These workshops are different from casual leisure sessions in that they have more structure, preparation (from the presenter), relevance to autism and the event's theme, and duration.
____ A few notes of caution ___________________________________
* Cures:
Workshops about curing or preventing autism are likely not to go over well at all and are best avoided altogether, unless it is from an advocacy standpoint.
* Problems:
The problems of non-autistics coping with autistic people could inadvertently reinforce negative attitudes.
* Personal Experience:
We all have personal experience of autism. If your presentation is primarily based on your personal experience, think carefully about its relevance here; the story needs to be one which can help attendees to find new understanding of their own situation. Please let us know what you're hoping those present will gain from your presentation.
* Suitability:
Every workshop, no matter who it is targeted towards, should be suitable for autistic people to attend without feeling objectified or put down.
____ What do we expect from you? ______________________________
* Attendance:
If you submit a proposal, we do expect you to be there! Please be prepared to attend Autscape and give your presentation on the day and time scheduled. If you choose not to attend Autscape for the whole 3 days we will do our best to fit the schedule around your needs.
Travel is the responsibility of each individual presenter. We cannot subsidise travel or off-site expenses for anyone. If your proposal is accepted, we will send you a formal letter of invitation if this will help you to secure your own funding.
* Discussion groups:
Presenters may be expected to run an evening or afternoon discussion group on their topic, for those who would like to explore the issue further. If you may have problems with this, we will try to find a volunteer to help you.
* An article:
We would like an article about your presentation for inclusion in a proceedings booklet to be prepared and printed at a later date. This booklet will be sold to raise funds for Autscape.
* Presentation materials:
Please send copies of any handouts and computer presentations (e.g.
powerpoint) ahead of time. These will be made available for download by Autscape participants and printing for those who require it.
* Archive:
We would like to include your presentation summary, biography and any electronic handouts you provided in our website's archive area.
* Recording:
Please allow us to video or otherwise record your presentation. These records may be made available to others by Autscape. If you submit a proposal we will assume you are happy with these expectations. If you have any questions or objections, please let us know so we can discuss it.
____ What can you expect from us? _____________________________
* Attendance:
Presenters will be accommodated on-site for the day of their presentation including the night before or after. Only one place can be subsidised for each presentation, regardless of the number of presenters. Unfortunately, due to the funding situation we cannot offer free attendance at all of Autscape this year.
* Participation:
Whenever you are not presenting you can enjoy the event, including other workshops and the setting, just as any other participant.
* Involvement:
One thing you can expect by joining us is the opportunity to shape an emerging self-advocacy event and autistic community. There will be opportunities at the event to get involved in the future of Autscape.
* Audience:
A rare opportunity to be heard by a significant number of autistic people. A chance to have some influence and get some feedback from the people who matter most in the field of autism.
____ How to submit your proposal ______________________________
To submit your proposal, please use one of the following:
* online form: http://www.autscape.org/proposals/proposalform
* e-mail: info@autscape.org
* or post to: Autscape, 4 Falcon Street, London, E13 8DE, UK
All proposals must be received by 1 May 2009.
Please include the following information.
1. ABOUT YOU
a. Name
b. Country
c. At least one of:
o e-mail address (preferred)
o phone number
o postal address
d. Experience (A summary of your relevant experience, including
any presentations or other education/advocacy activities
elsewhere, and the nature of your interest in autism and/or in
general disability issues.)
2. INFORMATION FOR THE PROGRAMME
a. Your name or alias (for public use)
b. Biography (50-150 words)
c. Presentation title (1-12 words)
d. Summary (100-200 words)
3. ABOUT YOUR PRESENTATION
a. Type of session (choose one)
o Lecture (audience mostly listens)
o Workshop (audience participates verbally)
o Hands-On (audience participate physically)
o Other (please describe)
b. How does your presentation relate to this year's theme
'Effective Living'?
c. Please describe your presentation or activity for the decision makers.
4. Other comments not addressed above
(end)
Monday, February 23, 2009
More Violence against defenceless Autistics
Yet another story of school/police overreaction is being reported on the autism hub.
I am talking about the 14 year old child tazed unconsicous at school.
I think this bears multi level analysis to determine just what is going wrong.
Firstly I think there is a kind of legal paranoia, passing the buck, where teachers are so scared of adverse litigation if they have any physical contact with a child at all, especially in a violent and heated situation, that whether or not they would be capable of handling the situation they would sooner call the cops and wash their hands.
Secondly there maybe increasing paranoia about becoming a victim of violence, and let us face it teachers do face that threat more than they used to. That paranoia has driven the zero tolerance policies, where anything becomes a call the cops situation.
However there is more to said as the failings are not in any one person or institution.
This is an endemic institutional fear to begin with, driven by sociological issues that can be addressed in much better ways.
Not only do schools need to have clear policies regarding what is acceptable and what is not, they need training to understand developmental psychology at it’s most basic level, never mind jurisprudential questions about responsibility and mens rea.
At the “chalkface” the teacher needs to be trained in non aggressive intervention, in de-escalation techniques, and above all to have a degree of experience, tolerance, and lets face it “theory of mind” and if the cops are going to be called, then they need an equal degree of training and awareness to handle such situations, they need to realise that in such cases it is a child protection issue, not a preserve oneself against bruises at all cost and help the school to save face issue. If the firefighters adopted such an attitude of fear and paranoia over their own safety they would never enter a burning building. Risk is part of the job, and minor injuries are no more than that.
Furthermore don’t anyone come over self righteous and try and tell me that I have no idea of what the cops might be thinking or what they are faced with in potentially violent and dangerous situations, many years ago I was beaten to the ground by a gang of bikers, who turned their pool cues onto me. My crime in their eyes was having a go at them for kicking a defenceless guy on the ground. I had no taser, but I just did what every citizen ought to and suffered the consequences.
And yes I have been the "berserker" on the other side of the equation too, but I have managed not to kill or injure anyone yet. I have merely lived in more fortunate and tolerant times.
I am talking about the 14 year old child tazed unconsicous at school.
I think this bears multi level analysis to determine just what is going wrong.
Firstly I think there is a kind of legal paranoia, passing the buck, where teachers are so scared of adverse litigation if they have any physical contact with a child at all, especially in a violent and heated situation, that whether or not they would be capable of handling the situation they would sooner call the cops and wash their hands.
Secondly there maybe increasing paranoia about becoming a victim of violence, and let us face it teachers do face that threat more than they used to. That paranoia has driven the zero tolerance policies, where anything becomes a call the cops situation.
However there is more to said as the failings are not in any one person or institution.
This is an endemic institutional fear to begin with, driven by sociological issues that can be addressed in much better ways.
Not only do schools need to have clear policies regarding what is acceptable and what is not, they need training to understand developmental psychology at it’s most basic level, never mind jurisprudential questions about responsibility and mens rea.
At the “chalkface” the teacher needs to be trained in non aggressive intervention, in de-escalation techniques, and above all to have a degree of experience, tolerance, and lets face it “theory of mind” and if the cops are going to be called, then they need an equal degree of training and awareness to handle such situations, they need to realise that in such cases it is a child protection issue, not a preserve oneself against bruises at all cost and help the school to save face issue. If the firefighters adopted such an attitude of fear and paranoia over their own safety they would never enter a burning building. Risk is part of the job, and minor injuries are no more than that.
Furthermore don’t anyone come over self righteous and try and tell me that I have no idea of what the cops might be thinking or what they are faced with in potentially violent and dangerous situations, many years ago I was beaten to the ground by a gang of bikers, who turned their pool cues onto me. My crime in their eyes was having a go at them for kicking a defenceless guy on the ground. I had no taser, but I just did what every citizen ought to and suffered the consequences.
And yes I have been the "berserker" on the other side of the equation too, but I have managed not to kill or injure anyone yet. I have merely lived in more fortunate and tolerant times.
Saturday, January 17, 2009
What is Autism? and am I Autistic?
Two big questions, and for all the talk of self diagnosis going about on the internet, most of the time in my life I do not see the autism any more than a neurotypical would see their neurotypicality, and for all of my life when I am on my own I am simply me doing what I do unobserved. I don't see the autism in the heat of engagements either because I am too busy figuring out what I am supposed to be doing, and it is only afterwards if I try and analyse it that I see the oddity, that which marks me out as Autistic in the eyes of the trained observer.
Well yesterday I wonder whether I was not annoying the fire brigade with my preoccupation with having locked myself out while they were busy fighting a fire, well I don't know?
Anyway this is why I post this video
(well not entirely the NAS have pestered me)
I leave it without comment except to say that I have certainly been seen to behave in odd ways on public transport, indeed it is noticable that so many of the viral videos from the NAS have also featured public transport, almost to the point of a shot for shot copy of the opening moments of Outside In substituting a red bus for a blue one.
Trains also seem to feature somewhat in my youtube postings "Ten minute roughcut" and "another trailer for Terra Incognita" which incidentally was shown at an NAS international conference to an audience including Temple Grandin
There is a difference between my public transport footage and the NAS produced videos however, although the NAS material is based on interviews and real incidents my footage is live as it happens, there are no actors, it is absolutely real, and of course therein lies the oddity itself for who but an Autist could unselfconsciously walk onto a train or a bus with a camcorder and give a running commentary on what he sees to an unanticipating audience?
Well at least I have never been arrested for it yet.
Well yesterday I wonder whether I was not annoying the fire brigade with my preoccupation with having locked myself out while they were busy fighting a fire, well I don't know?
Anyway this is why I post this video
(well not entirely the NAS have pestered me)
I leave it without comment except to say that I have certainly been seen to behave in odd ways on public transport, indeed it is noticable that so many of the viral videos from the NAS have also featured public transport, almost to the point of a shot for shot copy of the opening moments of Outside In substituting a red bus for a blue one.
Trains also seem to feature somewhat in my youtube postings "Ten minute roughcut" and "another trailer for Terra Incognita" which incidentally was shown at an NAS international conference to an audience including Temple Grandin
There is a difference between my public transport footage and the NAS produced videos however, although the NAS material is based on interviews and real incidents my footage is live as it happens, there are no actors, it is absolutely real, and of course therein lies the oddity itself for who but an Autist could unselfconsciously walk onto a train or a bus with a camcorder and give a running commentary on what he sees to an unanticipating audience?
Well at least I have never been arrested for it yet.
Amtrak photo contestant arrested by Amtrak police in NYC’s Penn Station
Friday, January 16, 2009
Lightning strikes twice
I was just relaxing in my flat, having not long come home from Birmingham when there was a loud banging on my door. I went to my door and all I saw was someone scuttling off down the stairs, and then I realised, there was another fire in the block of flats, so I just grabbed my laptop, and a few documents from my top drawer, put my coat on and cleared off down the stairs before the smoke started, anxious not to be trapped on the top floor a second time.
Well fortunately the fire brigade came quick enough to ensure there was not the damage that happened in November, which incedentally has not been fully repaired yet, so I have not had to evacuate this time.
Unfortunately I left in such a hurry that I forgot to take my keys. I thought that a friend had a spare set but I spent a fruitless two way taxi ride to discover she had not :(
The Fire Brigade could have broken in for me but they would undoubtedly have done a lot of damage to the door, so I broke in myself using my trusty leatherman juice which fortunately I had in my pocket when I left. (anyone reading, this don't try it as normally the mortice lock is set as well as the latch.)
Hey I reckon I would make a nifty burglar.
Well I made a neat hole in my door so I could reach round and unlatch it, however I have now had to make a rather ugly repair, (and the door has been newly painted too) still it could have been worse.
Well fortunately the fire brigade came quick enough to ensure there was not the damage that happened in November, which incedentally has not been fully repaired yet, so I have not had to evacuate this time.
Unfortunately I left in such a hurry that I forgot to take my keys. I thought that a friend had a spare set but I spent a fruitless two way taxi ride to discover she had not :(
The Fire Brigade could have broken in for me but they would undoubtedly have done a lot of damage to the door, so I broke in myself using my trusty leatherman juice which fortunately I had in my pocket when I left. (anyone reading, this don't try it as normally the mortice lock is set as well as the latch.)
Hey I reckon I would make a nifty burglar.
Well I made a neat hole in my door so I could reach round and unlatch it, however I have now had to make a rather ugly repair, (and the door has been newly painted too) still it could have been worse.
Saturday, January 10, 2009
Why science will never have the answers to Autism
I have a hangover, that's not relevant, but I am awash with ideas, and I feel after commenting in the same fashion on two blogs within the autism hub which deal with different theories of Autism, the one from our old friend and bogey Simon Baron Cohen, the other from the laughably named "Mind Institute", that it is worth repeating on my blog.
Essentially so many theories of Autism are being advanced that they are mutually insupportable.
One might claim that one is right and the other is not, but in doing so one is not really making a scientific choice so much as a personal preference given that the mutually insupportable theories when taken as separate entities all appear in peer reviewed journals and are internally consistent with the notions of scientific investigation and statistical validation.
I have approached this topic before when I quoted from Dermot Bowler's book.
http://laurentius-rex.blogspot.com/2008/08/citical-thinking-is-not-bad-thing.html
And if one wants to follow such ideas further one gets into the difficult territory of Wittgenstein, Quine and others as this critique of scientific method has a good grounding in philosophy (from whence science springs anyway).
Well to turn aside and get back to the main track, I will soon find myself teaching a module on a course constructed by my supervisor which investigates the position of autism in society. This is part of the Uni's BA in Childhood Culture and Education. Although this course is intended for undergraduates who do not have much of a background in Autism, it would be just as relevant to the likes of Simon Baron Cohen, Jenny McCarthy, David Kirby, and all the other popular pundits of autism who all mutually fail to understand just what they are really on about, who think they know all about autism when they only ever see the aspect they are dealing with directly.
And so for the third time today I will quote myself again: -
There is no single gene/cause for the categories "Artist" or "Scientist" each condition is contingent upon multiple factors because they are a human category not a natural one, in essence the reason why a single gene or cause will not be found is because "Autism" is also a human category, and as such is not "watertight" it leaks all over the place because that which is called autism is the confluence of many rivers and depending where you stand in the lake you might feel the influence and currents of any one of them more than another.
Therefore those who pin the argument for autistic's rights on the outcome of a science which can describe us in a positive way are on a hiding to nothing as the remedies are societal and to hope for a scientific justification is to bend science according to ones will, which of course is what all scientists and philosophers do anyway.
Autism finds itself wholly within the social model of disability for an explanation of how it is studied, valued, devalued or otherwise debated.
Thursday, January 01, 2009
Urbi et Orbi
Do I have a new years message for the world as one year slips by into the next?No not really, I have not the energy for it.
I leave the old year somewhat embittered by my experiences of it, what could have been a year of hope, but seeing what has happened to the economy, never mind the prospects for world peace, seems like one I will not wish to repeat.
I have had all the fight and the stuffing knocked out of me, all I can do is rant on like an ageing King Lear.
I have survived Christmas, but am not yet ready to fully engage with the new year and take up my usual responsibilities, both to myself and others. I am continuing to take a break.
My visit to South Wales was good fun, but the weather has not really been too good for seeing much else in the world.
I have my insurance cheque at least and need to use the car one last time to carry some goodies home from the new branch of IKEA, which has settled in the centre of Coventry as one 140 foot tall blot on the landscape, where once was a co-operative store where I used to shop when I lived oppositte to it in a housing co-operative. The words co-op mean nothing nowadays, but co-operatives were once seen, like credit unions as useful social institutions for the working classes to better themselves and gain some toe hold on economic equality. I still have my one pound share in the local Co-op, whose cider I must say is of excellent quality but that is a diversion (albeit a pleasant one)
Perhaps all that is left to me now is to subside into a life of drinking as much as I can whilst I can still afford it, and shaking off the demands of life, I don't know because I am not yet ready to assume them again.
So much to do and so little time to do it as ever, and what time there is, is wasted as it is pointless doing anything when your heart is not in it.
Well my heart is still into photography so here are my recent pictures, the weather has not been kind and one makes the best one can.
http://www.larry-arnold.info/photography/Scenery/endofyear.htm
The picture accompanying this blog is local, from the Warwickshire/Oxfordshire border near Edge Hill showing the heavy frost and dullness that is the weather currently.
Sunday, December 28, 2008
Happy New year
If such a thing is indeed possible in this world of crisis succeeding crisis :(
Maybe someone out there will have a better new year. For my part I am glad that the big Christmas disruption is over, it takes some time however to get back into a routine, and indeed to address many of those issues that have not gone away in the meantime.
So What!
I intend to have one last fling while I have a hire car, one journey into Wales is not enough, I am going back, but this time to the South before the year is out. Be warned, there will be photographs.
Maybe someone out there will have a better new year. For my part I am glad that the big Christmas disruption is over, it takes some time however to get back into a routine, and indeed to address many of those issues that have not gone away in the meantime.
So What!
I intend to have one last fling while I have a hire car, one journey into Wales is not enough, I am going back, but this time to the South before the year is out. Be warned, there will be photographs.
Friday, December 19, 2008
Merry Christmas
Here is my Christmas Card. (I am not very good at posting them out IRL) and below is a video cobbled together out of something else which probably is closer to the mood I am in. It's the winter, it's normal for me to be feeling down.
I have journey ahead of me, and when I return, I will look at life again in the new year and try and sort out what can be sorted, and as for the rest, well it is Terra Incognita .......
"Into my heart an air that kills
From yon far country blows:
What are those blue remembered hills,
What spires, what farms are those?
That is the land of lost content,
I see it shining plain,
The happy highways where I went
And cannot come again."
AE Housman.
Sunday, November 23, 2008
Not a happy bunny tonight.
Well you would think having to abandon my home because of a fire was bad enough.
Well it is not the worst that could happen, no indeed, something worse has happened.
I was getting over it, ready to move back in next week, but I have just received a very disconcerting email.
Trivial for some, but not to me, because my research and hope of making something of myself academically has been the main thing that has been sustaining me through this current bad patch.
Well not any more because Research Autism has turned down my funding application, and frankly I do not see how I can continue without any funding at all.
I guess I ought not to say what I think of them at this current time, anger is never a good basis for a sensible post, but I will have a score to settle, that is for certain, how I go about it with common sense is another matter.
Well I do obsess a little about the significance of dates and numbers, and this is coming up to the tenth anniversary of my most determined desire to kill myself.
I wish I had, because all that the intervening ten years has held out to me is an empty promise.
Terra Incognita, the unknown land, that far country from whose bourne no traveller returns. Well the bourne beckons, and December 25th will be decision day, at least I am staying that long in this world, but really, I am not sure I want to be here next year, because I don't think I am going anywhere but a life of poverty and underachievment.
Did I survive for this? who knows what is written, but running up the down escalator is my progress, not otherwise.
Good job I am not drunk isn't it, but I still do have things to complete never mind how I feel tonight, and perhaps it is that determination that is the only thing that will keep me going.
Gawd, what a whinger, shoot me now eh :)
Well it is not the worst that could happen, no indeed, something worse has happened.
I was getting over it, ready to move back in next week, but I have just received a very disconcerting email.
Trivial for some, but not to me, because my research and hope of making something of myself academically has been the main thing that has been sustaining me through this current bad patch.
Well not any more because Research Autism has turned down my funding application, and frankly I do not see how I can continue without any funding at all.
I guess I ought not to say what I think of them at this current time, anger is never a good basis for a sensible post, but I will have a score to settle, that is for certain, how I go about it with common sense is another matter.
Well I do obsess a little about the significance of dates and numbers, and this is coming up to the tenth anniversary of my most determined desire to kill myself.
I wish I had, because all that the intervening ten years has held out to me is an empty promise.
Terra Incognita, the unknown land, that far country from whose bourne no traveller returns. Well the bourne beckons, and December 25th will be decision day, at least I am staying that long in this world, but really, I am not sure I want to be here next year, because I don't think I am going anywhere but a life of poverty and underachievment.
Did I survive for this? who knows what is written, but running up the down escalator is my progress, not otherwise.
Good job I am not drunk isn't it, but I still do have things to complete never mind how I feel tonight, and perhaps it is that determination that is the only thing that will keep me going.
Gawd, what a whinger, shoot me now eh :)
Wednesday, November 12, 2008
Big trouble in little Coventry
If you follow the link you will see why.
Having limited internet access is what really sucks right now.
Well I am comfortable enough in B & B for now and I have recovered the things that are important to me.
All will be well in the long term, but in the short term, it is difficult for me to maintain my various responsibilities, however it is important to me not to pass my misfortunes on to any one else and let them down with regard to stuff I had arranged to do with them.
Talk about fifteen minutes of fame, our block was headline news taking up two pages in the local paper yesterday.
http://tinyurl.com/5ukmzk
More to follow when my situation is back to normal, sorry no video of the fire, safety comes first, but I hope to post a video diary or something on youtube :)
I have never looked smarter BTW, had to buy new clothes cos I only had what I stood up in, which smelt like a barbecued kipper.
Anyway my flat is relatively undamaged as I was furthest away from the seat of the fire, but if the fire brigade had not attended so promptly it might have been a different story.
The sh*t comes from dealing with all the bureaucracy you have to go through just to keep any kind of roof over your head.
I am through the worst of it now and have been able to go back and recover some essential items from my flat including my flute, documentation (which you don't even exist without these days) and my precious video hard discs which I was working on when the fire broke out and had to abandon.
Tuesday, November 04, 2008
Coventry Market the Musical
Nothing to do with autism or me even, but this is where I live, and this town has a history.
http://www.bbc.co.uk/mediaselector/check/coventry/realmedia/market_musical?size=16x9&bgc=C0C0C0&bbram=1
http://tinyurl.com/5rsra2
The building is of course threatened with demolition, never mind it's historical significance, It was designed by Frederick Gibberd and is actually the prototype for Liverpool Catholic Cathedral, in terms of a circular structure with a lantern.
There is something unique about a circular market and I know of no other like it.
http://www.bbc.co.uk/mediaselector/check/coventry/realmedia/market_musical?size=16x9&bgc=C0C0C0&bbram=1
http://tinyurl.com/5rsra2
The building is of course threatened with demolition, never mind it's historical significance, It was designed by Frederick Gibberd and is actually the prototype for Liverpool Catholic Cathedral, in terms of a circular structure with a lantern.
There is something unique about a circular market and I know of no other like it.
Monday, October 27, 2008
My 53rd Year to Heaven
Not in the best frame of mind, the video speaks for itself.
The title reference is to Dylan Thomas, who like me was a Scorpio, born on the 27th of October just a days difference in our dates.
Friday, October 17, 2008
Teaching Poetry to frogs.
Yesterday in what I suppose must be a moment of madness, I submitted my DVD “Whichever way” to an assessment clinic at a local Institute of Videographers exhibition.
I was there to check out all the new equipment which I cannot afford, though fortunately I will be getting some editing equipment out of my Disabled Students Allowance as it is essential for my studies.
Anyway I told them from the beginning that it would be “different”
“Doesn’t matter, we have seen all sorts” the guy said.
However it was apparent right from the outset that it was to them jaw droppingly different, being as they are used to wedding videos, narrative stuff and that sort of thing.
Firstly they criticised it for being too wordy …. Well it is a lecture after all, but when I got to the end, the part where it is pure visual, they said they said it could benefit from a voice over, you can’t win, I took the voice over out on the advice of an artist who said I did not need it, the pictures said it all.
Then they criticised me for holding the same shots too long. Now hold on a minute, I have seen Tony Atwood’s videos, there is one camera angle throughout, not uncommon in a lot of straight to camera material that still exists in the genre. If I had stuck to the conventions of the action movie and never held a shot for more than 5 seconds the whole piece would look crazy. It is a lecture for goodness sakes, aimed at a reasonably literate audience, not action junkies with the attention span of a goldfish.
Then they did not understand some of the cut away shots that were there. Well I said, you are not supposed to understand them, it is a video about autism, some of the cutaways are meant to invoke a state of cognitive dissonance.
They criticised my delivery, reading from a sheet, well that was a deliberate Trope, that is to say, I deliberately made no attempt to engage the potential audience in vicarious eye contact, this is about autism after all.
Worse than that they suggested I ought to have got in a professional voice over artist.
Well again I said, what would be the point of that, I am autistic, there would be no authenticity you would lose all the voice inflections, and prosody of an autistic presenter, it might as well be someone else’s documentary if I did that.
They said that I could have cut out a lot of what I said, dumbed down.
Well again the point is to deliver a complex idea, a mini thesis as it were.
They obviously have not seen a great many educational videos, which would make mine look considerably more sophisticated by comparison.
I give up, NT’s want to see what NT’s want to see, they don’t care about the lyrics of a song so long as they can whistle the tune, they are not looking for depth and sincerity.
Maybe it achieved something, as I took the autism out to somewhere it was not expected.
It is interesting by contrast that many autistic people, whose opinions I have sought are seeing something else in the video, they are picking up the message of the graphics, and cut-aways and not remembering the text.
I can’t win but this in a way was a useful experiment, an adjunct to my research in fact, so far as it demonstrates anecdotally at least that there are differences in the way in which autistic people decode and understand video, what they are attending too.
Well I know that the video deals with a very difficult subject and one that is not popular, a subject I have been dealing with since before Stuart Murray wrote his book I might add, he will have seen the video first. “Outside In” which deals with a more conventional perspective easily outsells it. I can’t force NT’s to listen to the message I want to give them, and so often it has to be sugar coated and wrapped up in what they want to hear before you tell them it ain’t necessarily so.
You can bring a horse to water but you can’t make him drink, and I think sometimes trying to explain the rich beauty that can be seen in autism and that comes from autism, is the equivalent of trying to teach poetry to frogs.
If you are interested in a more general overview of the kind of videos I make you can visit my YouTube channel, it seems that the most popular is me playing the flute, maybe I really should pick it up and play it during my presentations after all.
Wednesday, September 17, 2008
Getting along swimmingly
Today I achieved something, that might not mean a lot to many people and for the world of me I cannot relate to Autism, but for the first time in my life after a year of learning I felt able to enter the deep end of a swimming pool and to swim 25 metres to to the end of the pool and then to swim back again toward the deep end completing the second length of 25 metres.Now a year ago at the same time as I began my swimming lessons I embarked upon my doctorate and this weekend will be addressing an international conference and giving a way better performance than the token autie, Mr Stephen Shore I am sure. (at least I acknowledge that it is performance and I will entertain as much as I enlighten I hope)
However that is less of an achievement to me than my achievement in the swimming pool today.
All that I have done of course is to have achieved the basic standard that any 11 year old is expected to achieve and forty years late at that.
Well if anyone who attended Finham Junior school is reading this, A couple of years ago I met a former schoolmate who remembered me as the boy who never learned to swim.
How anyone learned to swim is actaully beyond me. For years parents raised money for what seemed to be a magnificent project to build a school pool. However by the time they achieved their aims the pool was nothing more than an open tank between the playground and car park.
We boys did not even have the privilege of a changing room, because the architects only built one, and that was reserved for the girls, we had to change in a corridor, and every week march barefoot in whatever weather across the tarmac playground to this open tank.
If that was not bad enough I was put off swimming for life by a teacher whose reaction to my reluctance to duck my head under the water was to hold it under.
Never mind that no-one ever appreciated the other difficulties I had with swimming namely a dyspraxic lack of co-ordination.
Well in my next school at least we had the luxury of going to the simply huge "olympic pool" in town, but by that time the damage had been done, and increasingly nobody bothered with the slow learner so I was sidelined, and gave up swimming as soon as I was able to.
What a loss that was as it is now something I really enjoy.
Friday, September 05, 2008
An Asperger encounter
I have just come back from a disability studies conference where I was presenting.
I decided to stay an extra day in the accommodation so I would not be so tired, to catch the train tomorrow, and since there was no meal or anything provided I decided to use the kitchen, to make myself a pot noodle, to stave off my hunger for the evening.
There were a couple of other delegates who were staying overnight too, and they were asking the usual questions, what was my research about, where did I come from etc.
Anyway there was guy who was staying there, by the name of Volker Schönwiese from Innsbruck University who said he came from Austria. So naturally I asked him if he had heard of Hans Asperger. Not only had he heard of him, he had been sent to his clinic as a 10 year old child
He was a wheelchair user, and when he was younger his family wanted him integrated into the mainstream school, but the authorities were resisting it, so he was sent to Dr Asperger for a consultation. Apparently Dr Asperger did all sorts of tests including an IQ test, and wrote up a report saying that children with Polyarthritis were extraordinarily gifted and he should be given all the facilities he needed to go to a mainstream school.
It was a white lie of course because there was no scientific evidence to support that notion, but it illustrates something of the character of the man back then, that he would write something like that into an official report to ensure that a disabled child got the same schooling as everyone else, and not the second rate schooling he might have got if he were sent away to a special school.
He said that Dr Asperger was a pleasant and very kind man. Sometimes it is a small world, and now I have met someone who met with Hans Asperger.
I have included a link to a pdf of Professor Schönwiese's presentation which may be of interest to people in the wider disability world.
http://bidok.uibk.ac.at/download/handout_san_francisco.pdf
I decided to stay an extra day in the accommodation so I would not be so tired, to catch the train tomorrow, and since there was no meal or anything provided I decided to use the kitchen, to make myself a pot noodle, to stave off my hunger for the evening.
There were a couple of other delegates who were staying overnight too, and they were asking the usual questions, what was my research about, where did I come from etc.
Anyway there was guy who was staying there, by the name of Volker Schönwiese from Innsbruck University who said he came from Austria. So naturally I asked him if he had heard of Hans Asperger. Not only had he heard of him, he had been sent to his clinic as a 10 year old child
He was a wheelchair user, and when he was younger his family wanted him integrated into the mainstream school, but the authorities were resisting it, so he was sent to Dr Asperger for a consultation. Apparently Dr Asperger did all sorts of tests including an IQ test, and wrote up a report saying that children with Polyarthritis were extraordinarily gifted and he should be given all the facilities he needed to go to a mainstream school.
It was a white lie of course because there was no scientific evidence to support that notion, but it illustrates something of the character of the man back then, that he would write something like that into an official report to ensure that a disabled child got the same schooling as everyone else, and not the second rate schooling he might have got if he were sent away to a special school.
He said that Dr Asperger was a pleasant and very kind man. Sometimes it is a small world, and now I have met someone who met with Hans Asperger.
I have included a link to a pdf of Professor Schönwiese's presentation which may be of interest to people in the wider disability world.
http://bidok.uibk.ac.at/download/handout_san_francisco.pdf
Friday, August 29, 2008
One on't cross beams gone out askew on't treadle
I expect there will be trouble at'mill by the time some folks have read and digested this post ..
One of my abilities is the ability to think in pictures though images is probably a better way to talk about it, as there is nothing particularly flat or two dimensional about this. I believe this allows me to easily create analogies and to be able to approach problems from different directions, that would never occur to someone who has to construct everything in words. Which part of the neurodiverse territories this comes from does not matter for the argument here. I want to give you a little example illustrating the fallacy of trying to find a medical cure for complex neurodevelopmental differences.
I don't suppose many of you have seen either a Stevengraph, or know the workings of Jacquard loom. A Stevengraph was an elaborate silk picture, woven on a Jacquard loom which uses punched card to determine how the threads are all woven together. To see one in action as I have at Coventry's museum in the past is quite amazing.
Anyway if we were to consider the Stevengraph as the brain, we could see that the punched cards are perhaps the DNA, and the mechanical maintenance of the machine, that keeps it oiled, the parts fitting together properly, and feeds in the different coloured silk could be seen as the epigenetic or environmental factors that also have to gel to create the flawless finished product.
Now imagine one of these wonderful artefacts gone awry, perhaps with rivers of red silk running through it, or sections of the picture missing. How can you fix it? If you unpick all the silk that ought not to be there, or attempt to patch in what was missing, you will not get the original intended picture back, it won't have the same structure, it won't be the same at all. And to try and go back one stage further and discover just where it went wrong, if it is in the punched cards for instance, to discover which particular extra holes, and which missing ones caused it all to go awry would be a nightmare.
Well a Stevengraph elaborate though it is, is a lot less complex than the brain. You can no more expect to unpick dyslexia, or autism, and get the whole picture back, than you can unpick the silk. There is no easy magic pill. You can't just oil the cranks and get it to run right, it's more than that.
That is why I do not believe in easy medical answers and quick fixes. The medic is akin to the mechanic, trying to keep the machine running, not the designer who punched all those holes.
One of my abilities is the ability to think in pictures though images is probably a better way to talk about it, as there is nothing particularly flat or two dimensional about this. I believe this allows me to easily create analogies and to be able to approach problems from different directions, that would never occur to someone who has to construct everything in words. Which part of the neurodiverse territories this comes from does not matter for the argument here. I want to give you a little example illustrating the fallacy of trying to find a medical cure for complex neurodevelopmental differences.
I don't suppose many of you have seen either a Stevengraph, or know the workings of Jacquard loom. A Stevengraph was an elaborate silk picture, woven on a Jacquard loom which uses punched card to determine how the threads are all woven together. To see one in action as I have at Coventry's museum in the past is quite amazing.
Anyway if we were to consider the Stevengraph as the brain, we could see that the punched cards are perhaps the DNA, and the mechanical maintenance of the machine, that keeps it oiled, the parts fitting together properly, and feeds in the different coloured silk could be seen as the epigenetic or environmental factors that also have to gel to create the flawless finished product.
Now imagine one of these wonderful artefacts gone awry, perhaps with rivers of red silk running through it, or sections of the picture missing. How can you fix it? If you unpick all the silk that ought not to be there, or attempt to patch in what was missing, you will not get the original intended picture back, it won't have the same structure, it won't be the same at all. And to try and go back one stage further and discover just where it went wrong, if it is in the punched cards for instance, to discover which particular extra holes, and which missing ones caused it all to go awry would be a nightmare.
Well a Stevengraph elaborate though it is, is a lot less complex than the brain. You can no more expect to unpick dyslexia, or autism, and get the whole picture back, than you can unpick the silk. There is no easy magic pill. You can't just oil the cranks and get it to run right, it's more than that.
That is why I do not believe in easy medical answers and quick fixes. The medic is akin to the mechanic, trying to keep the machine running, not the designer who punched all those holes.
Saturday, August 16, 2008
The past is a foreign country, conceptualising childhood.
I often wonder on reading the parents blogs on the autism hub, if back in the fifties, before I was five, in an alternative universe where they might have been internet savvy and had the means to disseminate there joys, frustrations and perceptions of that puzzle that was the infant Larry - what would have appeared as a representation of my life?I do not know the half of it even. I know the pictures at least but the text is lost, and even so what would it say about me today, about what I am and what I became. It would have been at best an incomplete story.
Friday, August 15, 2008
Critical thinking is not a bad thing
I talked a little about criticism in my last blog, and was indeed critical of a certain genre of writing about autism.
I intend to turn aside from the sociological rumblings around autism and back to what seems to be everyone's favourite topic in the blogosphere, which is the science of autism.
I will be presenting a paper very soon, which is rather critical of that science, and I expect the that those devotees who see everything in science as either black or white will be muttering to themselves "There goes would be Dr Larry again, with his sour grapes, knocking everything down but not putting anything in it's place" I had similar comments on my school reports when I refused to take the standard theories of the day at face value simply because they came with the authority of the teacher.
Well for once I shall defer a little to authority, to a more experienced researcher than myself who has doubtless read more papers than I know existed.
Incidentally it is an article of his that gave me a lot of pause for thought when writing my recent paper.
His name is Dermot Bowler, and he has not long ago had a book called:
"Autistic Spectrum Disorders, Psychological Theory and Research"
Published by Wiley in 2007
Now whilst his literary style would not gain him an A* pass in todays A level exams, I should be the last person to hold that against him :)
There are a number of chapters there where he reviews the current theories and the studies out without interposing his own position too much.
I would just like to quote a couple of pertinent passages from the final chapter of the book where he talks about the somewhat erratic nature of all the research so far:
Further on he says at the very end of the book:
I intend to turn aside from the sociological rumblings around autism and back to what seems to be everyone's favourite topic in the blogosphere, which is the science of autism.
I will be presenting a paper very soon, which is rather critical of that science, and I expect the that those devotees who see everything in science as either black or white will be muttering to themselves "There goes would be Dr Larry again, with his sour grapes, knocking everything down but not putting anything in it's place" I had similar comments on my school reports when I refused to take the standard theories of the day at face value simply because they came with the authority of the teacher.
Well for once I shall defer a little to authority, to a more experienced researcher than myself who has doubtless read more papers than I know existed.
Incidentally it is an article of his that gave me a lot of pause for thought when writing my recent paper.
His name is Dermot Bowler, and he has not long ago had a book called:
"Autistic Spectrum Disorders, Psychological Theory and Research"
Published by Wiley in 2007
Now whilst his literary style would not gain him an A* pass in todays A level exams, I should be the last person to hold that against him :)
There are a number of chapters there where he reviews the current theories and the studies out without interposing his own position too much.
I would just like to quote a couple of pertinent passages from the final chapter of the book where he talks about the somewhat erratic nature of all the research so far:
"Failure to replicate findings can be explained in a number of ways. Either the phenomenon does not exist and the initial, positive finding was a random event. Or perhaps there were differences in the samples used; one study may have tested higher-functioning or older individuals while another used those with lower IQ. Many studies have small sample sizes and as a consequence have insufficient statistical power to reveal between group differences. Procedural differences may also yield different outcomes......"There speaks someone who has read many studies critically in the way they should be read, and he even includes his own work in that summary.
Further on he says at the very end of the book:
"The speculations in the last paragraph bring us back to the question of what it must be like to be autistic (See Frith and Happe 1999). Ultimately, the psychology of ASD must provide an answer to this question. But it must also provide an explanation. Readers who have made it this far (as well as those who have skipped straight to here) may be expecting such descriptions and explanations as well as a punchy take-home message. Without wishing to be unkind to colleagues in the field (or perhaps wishing to be unkind to those who often misinterpret their ideas), the message is probably that we are sometimes too quick to generate quick snappy messages and that we are often too uncritical of the work we ourselves do. Autism spectrum disorder is now known to be a set of conditions that should not be reduced to a simple dichotomy of presence and absence. When present the conditions are multidimensional and complex, and although they share the common characteristics of social impairment and repetitive behaviours (at least from the perspective of a typically developed person) they often exhibit additional features that are not necessarily defining features of the spectrum. Such complexity requires a more subtle explanation than a simple reduction to an absent theory of mind, a failure of affective appreciation, diminished sense of self of fragmented perception. The complexity of ASD requires us to take a more distanced view and to go beyond simply trying to find new ways of describing the fact that people with ASD are autistic Science is about the reduction of complexity to simpler sets of entities and processes that interact in ways that are controlled descriptions of the behavioural manifestations of ASD. The challenge that faces us now is to step outside our own narrow conception of the issue and to work out how they fit together and why."It is very pertinent for me to be considering that too, at a time when I am currently trying to attract funding to my own research in the hope that I will in turn not replicate the faults of all too many small scale studies.
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