A little lesson in linguistics, or the people first shibboleth.

Chomsky notwithstanding (who talks of a technical reconstruction of syntax rather than a pedaogogical grammar ) The reality of  grammar in terms of "people first" language means less than the actual usage and it's connotations. That is to say the communicative intent and how it is understood in any particular community always takes precedence over any strict 'by the book' rule

I do not have sufficient knowledge of comparative linguistics to really analyse the way things can be said in languages that don't permit the same grammatical forms and alternatives as English. The very flexibility of English as a polyglot language encompassing more one grammar and vocabulary is partially what allows these distinctions, though the distinctions would still exist independently of language, only un-named and categorised, the fact that something is either named (or described) or not being in itself indicative of the social status of such a difference being expressed in the alternative forms

Anyway consider this description

"I am a convict."

That sounds pejorative -  I am someone who has been caught committing a crime and have been sentenced.

However, as any thesaurus will tell you, conviction bears alternative meanings. Consider further for example

"I am a person with conviction"  or "I am a person with convictions"

Very similar phrases we the second being merely a plural of the first. However but the context and conventional usage makes other distinctions. For instance the connotations of the first are fairly unambiguous that I am a person who 'is convicted, or convinced, a person who holds deeply entrenched beliefs  the most common instance being religious convictions. On the other hand the second phrase does not so readily (although it can) add a plural to, introduces an ambiguity that implies I am more likely to be a person who has been through the courts than a person who has more than one set of strongly held beliefs.

I can use a similar phrase using a similar word.

"I am a conscript" Which would be clear enough to understand that I am a person who has been conscripted into the armed forces, but to say I were 'a person with conscription ',  'a person with a presecription' or even 'a person who has a conscription'  that would appear to be rather nonsensical since the English language does not use a noun conventionally to describe the state of being conscripted,  conscription referring to the process rather than any single artefact one can posses like a 'prescription'

Turning it around then I could say though that I were a person with a prescription, but not a person with prescription. I can be a prescribed person though, which is entirely different to being a proscribed one, it's close homophone.

Well getting round to the argument by a difficult route.

I can be a described person and equally a person with a description. Disability or Autism being in this instance of the category 'description' not 'entity'

What all the foregoing really demonstrates is that there are no hard and fast pedagogical rules, only conventional usages and understandings one learns and uses in context. It's more idiom than strict grammar.

In the wider scheme of things it has nothing to do with any grammatical difference in the meaning if the adjective comes before the person, or after, because formal rules allow either. However the social use of language has determined something beyond grammar in determining whether a person is a disabled person, or a person with a disability because those two differences are in a sense shibboleths which determine or betray a lot more than the meaning of the phrase itself.

I have searched hard for a succinct summary of the difference and the best I can find comes ironically from the last place one would expect a style guide for 'political correctness' the Rugby Football league's style manual.

"Disabled people / person /spectator is the preferred term and the term used by the RFL as this reflects the social model of disability which emphasises that people with impairments are disabled by society not by their impairment. For example “Wheelchair users can’t use the facilities because the venue is inaccessible; therefore, we need to modify the building and the services we provide.”

The social model was not developed as some form of “denial” of impairment, it was developed in order to inform society, which includes disabled people, of the real reason that individuals are not able or allowed to take a full and active role in society. It follows then, if society in general, organisations and those individuals working within them acknowledge, understand and implement the ‘social model’, there would be far less discrimination against disabled people and greater access to services and the society as a whole.

Person with a disability is a medical model perspective which implies a person’s impairment or medical condition causes the disability. You firmly attach the disability to the person with this phrase when it’s not it’s with society. For example “Wheelchair users can’t use the facilities because of their impairment, as it prevents them from getting up the steps at the entrance of the venue”.You will come across many people, disabled and non-disabled, who use language we advocate avoiding i.e. people with disabilities. Firstly they may not know about the social model but also may choose to be referred to in a particular way. Where it is not appropriate to challenge (sometimes it will be) promote the use of preferred terminology through your own use and certainly in any marketing material that is produced."

Further musings on why 'people first' language is merely a pretence that enshrines discrimination rather than confronts it can be found in Jim Sinclairs classic piece which bears repeating in full:

"I am not a "person with autism."   I am an autistic person.  Why does this distinction matter to me? 

1) Saying "person with autism" suggests that the autism can be separated from the person.  But this is not the case.  I can be separated from things that are not part of me, and I am still be the same person.  I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me.  But autism is part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works.

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part.  Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness."  We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism."  We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job."  We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion."  Yet autism goes deeper than culture and learned belief systems.  It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies.  If I did not have an autistic brain, the person that I am would not exist.  I am autistic because autism is an essential feature of me as a person.

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person.  Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral.  We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality."  We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor.  It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.  I know that autism is not a terrible thing, and that it does not make me any less a person.  If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine.  Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad.  I am autistic because I accept and value myself the way I am." copyright Jim Sinclair 1999

The wheat and the chaff

In any system there is always a level of noise that interferes with the essential communicative process, at some point the noise becomes so severe that any message is liable to become swamped by it.

It pains me to do this, and I know what the reaction of those who will suffer most from this decision will be, but I am going to employ much stricter moderation on this blog from now on.

There is level of debate below which nothing is served by prolonging it. I am not trying to convince those who are dyed in the wool in their opposition to change there ways, that is, short of a miracle, impossible. Neither is my blog aimed at the convinced on the other side, I have no need of merely flattering egos in a mutual support club.

My aim is to appeal to the middle, ground, the as yet unconvinced in any direction, and in order to do that I have to filter out the noise.

It is a blog owners prerogative to allow what posts xe will, and there are many out there who are so strict they brook no opposition at all, which of course equally leaves me out when I try and comment on that territory.

I have to say enough is enough, and realise that those whose monofixated rants which end up as no more than prolonged 'bar room' 'Punch and Judy' arguments have no place in the comments section here. Those who left out cannot in any event claim discrimination as the internet and the blogosphere gives them ample chance to continue thosee arguments elsewhere. I happen to believe, not without reason that they are not sufficiently convincing in any case to gain an upper hold on any reasonable legislature or academic consensus, and so I will leave them too it in the 'flat earth land' populated by straw men and over emotional demagogues.

The matters I wish to discuss are far too important for the serious players to be put off by that level of noise.

I want anyone posting here to feel secure in the knowledge that their reason and sensibility will not be assailed by pointless and petty 'grudge' arguments, nor grade school scientific howlers adduced to support unsustainable hypotheses.

Campaign to end discrimination in human fertilisation (update)

Readers may recall a recent blog post, highlighting a particular incidence of such discrimination here and now, and may recall my intent to do some wider campaigning around this issue and wonder what happened.

Well academic work got in the way, that is what happened. However it is time to become active again and provide an update.

To begin with the expected response from an email campaign to contact a number of prominent researchers and names in the field of autism exacted a very poor response. This maybe because the email header was caught in too many spam filters, it maybe that the header sounded like an appeal for funds, not an appeal for action. It may also be that those I sought to contact were equally as busy as me in their academic endeavours and would need reminding. This latter I do intend to pick up on notwithstanding using other methods besides email to prompt a response, especially where the opportunity presents.

The second part of this report deals with the biotethics debate I attended recently. This too was caught up in delays and was postponed from it's original date to a date earlier this week, which fortunately for me co-incided with a stay in London.

The conclusions of the debate even for me with only a lay understanding of genetics, seem pretty clear. Any claims that any disorder has a single or a simple universal marker is very much contrary to the research that is going on into both the genetics and the etiology of various conditions as diverse as bipolar, autism, or Schizophrenia even if the current categories are in themselves sufficiently robust (which is another story)

That does not however mean on the other hand a charter for every crank with an environmental or dietary axe to grind. Matters are complex that is all, and whole books could be written on the complexity.

What is evident to me r is the dangers that are presented from over simplistic reporting of the research, whatever direction it is taking. Journalists like simple headlines, they like certainty not a series of unknown unknowns, and unfortunately those sponsoring the research often want to grab the headlines to, to the consternation of the people actually undertaking the research as this is all part of an economy of academic league tables and journal impact factor.

Often preliminary research findings will be reported before they have been published in peer reviewed journals, indeed sometimes the research is never published at all because it has been found wanting in various ways but the headlines remain.

One need not mention the classic example of Dr Wakefield's now withdrawn and discredited study as an example, there are many others out there whose results are not as conclusive as the headlines suggest, or that do not even say that the headlines suggest.

The problem is however that people do act on these conclusions, companies do offer genetic tests, insurance companies do revise their actuarial schedules, and discrimination of the kind that first drew my attention to this issue does occur.

Denial of equal rights to be the progenitor of a child on account of a false understanding of the science by people who really ought to know better.

What is the solution?

I think at one level it is for researchers to show more responsibility for the way their research is interpreted. For funders and academia likewise.

It is important for ethics review bodies to add an additional dimension to the considerations of any experiment or study. To go beyond the immediate concerns of the participants, to consider the effects it has upon those who have not chosen to be part of the study, but who are nonetheless implicated in terms of it's outcome.

I propose various actions to further this as a campaign and urge people on all sides of any particular divide over "neurodiversity" to give this equal worth, some fights are too important to let our individual differences of opinion get in the way. Bad science is bad science, and bad reporting even worse because it has implications for us all.

Anyway watch this space and keep watching, more will follow....

Another one bites the dust

Has anyone else yet noticed that John Best Jnr's blogs have disappeared from e-blogger?

Did someone get a result there? Is this a victory against hate speech?

Another Study Refutes Vaccination-Autism Link Whether measles shot was alone or in combination didn't matter, researchers say

It is not my usual procedures to copy articles but this one certainly kicks the monkey study in the balls.

I cite the abstract in full:

Objective: The first objective of the study was to determine whether there is a relationship between the measles-mumps-rubella (MMR) vaccination and autism in children. The second objective was to examine whether the risk of autism differs between use of MMR and the single measles vaccine.

Design: Case-control study.

Study Population: The 96 cases with childhood or atypical autism, aged 2 to 15, were included into the study group. Controls consisted of 192 children individually matched to cases by year of birth, sex, and general practitioners.

Methods: Data on autism diagnosis and vaccination history were from physicians. Data on the other probable autism risk factors were collected from mothers. Logistic conditional regression was used to assess the risk of autism resulting from vaccination. Assessment was made for children vaccinated (1) Before diagnosis of autism, and (2) Before first symptoms of autism onset. Odds ratios were adjusted to mother's age, medication during pregnancy, gestation time, perinatal injury and Apgar score.

Results: For children vaccinated before diagnosis, autism risk was lower in children vaccinated with MMR than in the nonvaccinated (OR: 0.17, 95% CI: 0.06-0.52) as well as to vaccinated with single measles vaccine (OR: 0.44, 95% CI: 0.22-0.91). The risk for vaccinated versus nonvaccinated (independent of vaccine type) was 0.28 (95% CI: 0.10-0.76). The risk connected with being vaccinated before onset of first symptoms was significantly lower only for MMR versus single vaccine (OR: 0.47, 95% CI: 0.22-0.99).

Conclusions: The study provides evidence against the association of autism with either MMR or a single measles vaccine.

Nothing new under the sun DSMV

So at long last the deliberations on DSMV are out. Well it has been what some of us have been predicting and campaigning for, for some time, a little logic in the equation, a little nod to where the research is actually pointing.

Indeed there is nothing new under the sun and it does not behove me to write anything new either, this is what I am on record as having said in 2005. (from whichever way you look at it, it's still autism)

"Kanner vs. Asperger

One particular persistent “Urban Legend” viewed over the autistic horizon is that Kanner's syndrome is the paradigm of classic autism and that all other forms are variants or dilutions of this.

The later appearance of Asperger’s syndrome as a diagnosis, the arguments as to whether it justifies the same levels of intervention or services as what was formerly considered to be autism and it’s the way it reads in DSMIV as “autism lite” seems to suggest to those desire to keep autistic purity at the “severe” end of a notional linear spectrum that the manual gives substance to their argument.

However analysis does not bear this out. The debate has raged and continues to rage over as to where it fits ever since Lorna Wing mooted a wider spectrum and drew attention to Asperger’s work,. The practical suggestion of a possible syndrome named after him was not so much drawn from his work as much as to remember his hitherto forgotten contribution to the literature of autism, However that remembrance has in a sense called it into being as a separate syndrome.

The way it is described in DSMIV is a social construct borne of committee decisions and a desire to leave open the debates at the time as to whether Asperger's Syndrome exists on a Schizoid, Schizotypal axis or as a continuum and broader phenotype of autism.

Leaving aside the cultural reasons why Kanner has hitherto received more prominence and become the Grand old Man of Autism as the more senior of the two in the urban legend we have to consider certain facts.

Kanner’s and Asperger's samples were both small in consideration to the population we now know of.

Notwithstanding their common middle European heritage, subsequent geographical separation of where they ended up in practice meant that there were cultural differences which affected the way their papers were written up, and cultural factors determining both the interpretation of the behaviours described and the way those behaviours manifested themselves given the different social milieu.

If anything, what is remarkable about both of their observations, despite the two men’s later trajectories and beliefs, is that given these differences there is a remarkable degree of correlation between these two seminal research papers, enough to indicate that they were dealing with small samples of a much larger and disperse population. Indeed the global and cultural separation of the two in the 1930’s and 40’s would tend to suggest that the phenomenon they observed and described was a real and global one.

The categorisation of DSMIV and the creation of Asperger’s syndrome as a separate clinical category has merely confused matters. Gillberg is on record as stating his opinion that none of Asperger’s patients would satisfy a current diagnosis of Asperger’s Disorder (DSM version) and all would come into the description of Autistic Disorder. Likewise Atwood an erstwhile populariser of Asperger’s syndrome has declared that the only difference between it and High Functioning Autism is the spelling.

Similarly a longitudinal study of Kanner’s patients would indicate they more readily describe a broader phenotype of functioning ability than those who seek to confine autism to within a strictly low functioning, non verbal paradigm for what appear to be largely political and social reasons I will elaborate later.

Finally in the descriptions in DSMIV itself Asperger’s Disorder is identical to Autistic Disorder except in that Autistic Disorder includes additional criteria for communication.

These criteria appear to have nothing to do with cognitive development, and are broad enough in my opinion to include practically everyone who currently bears the separate diagnosis of Asperger’s Disorder.

The relationship of Cognitive Capacity (a term I prefer to IQ as being accurately descriptive of what IQ attempts but fails to comprehensively map) to Autism or AS is another red herring.

The criteria of Asperger’s syndrome seem specifically to have been written to exclude very low IQ, and without reference to any real knowledge of what is being described.

It is merely a sleight of hand or as Film maker Alfred Hitchcock would describe it a “McGuffin”

It is arbitrary. Asperger’s syndrome as “high IQ autism” is not borne out when one considers measured IQ’s of 70 as the starting point. I do not know a figure for my own IQ, perhaps Professor Simon Baron Cohen has that somewhere but I think it is irrelevant to understanding of what is at the core of autism in that the possession of greater or lesser cognitive capacity is not determined by the autistic traits per se, and that the existence of greater of lesser cognitive capacity does not determine anything about the autistic traits either other than ones eventual ability to mitigate their effect. Glenys Jones, from Birmingham University, for example is on record as having stated something of this sort."

The Cure or enough is enough.

Well to begin with how does one conjecturalise tinnitus? a disability or an impairment or to quote one of Thomas Hardy's characters in 'a pair of blue eyes' an infernal frying of fish?

It is not as if I have not "suffered" from this phenomenon for longer than I can remember which would be well over forty years, but only recently did I assay the possibility that I could actually be rid of it.

Well no parables about Elizabeth Moon's speed of dark here, it came about because one night I was kept awake in hospital by the noise of an oxygen feed, it was actually louder than my tinnitus and at the same frequency so the "infernal frying of fish" for once actually disappeared, not that I got any sleep out of it.

Ok, there has to be some conjunction of circumstances some ontological causal trajectory inside the total perspective vortex as to how I come to be trying out a gizmo.

After over year of discomfort with what is supposed to be "benign paroxysmal positional vertigo" I was finally referred to an ENT, and during that consultation which included a hearing test that I aced, all except for a vital 4 khz in my right ear which commands this story, I mentioned my tinnitus and my recent experience.

Hitherto I have put up with it because I really have known no alternative, but I thought well give it try see what the clinic comes up with.

Well I was much surprised when a month or so later when I actually got to the tinnitus clinic that I was without hesitation given an in the ear gizmo worth about 185 GBP to try out with free batteries for life.

The theory is that the 4khz loss in my right ear is the source of it all, in that having lost that frequency (a cap gun was fired in my ear during childhood) the brain has missed that frequency and turned the gain up to the extent that I have become my own noise generator.

So like a crazed and desperate curebie clutching at straws for relief from the inevitable, I am giving it a try though I don't have a lot of hope. It is more in the spirit of Thomas Hardy again, where he talks in a poem of the Oxen Kneeling at Christmas.

"So fair a fancy few would weave
In these years! Yet, I feel,
If someone said on Christmas Eve,
"Come; see the oxen kneel

"In the lonely barton by yonder coomb
Our childhood used to know,"
I should go with him in the gloom,
Hoping it might be so."

I shan't be disappointed if nothing comes of it, I am a cynic, some things are not meant to be.

Genetics, Eugenics and Autism. It is not too late for action.

This is undoubtedly one of my longer blogs coming in at something like 3500 words. I hope you have the patience to see it through as the implications are very important, and in my follow up blogs I will be suggesting courses of action you can participate in if you feel as strongly about this issue as I and some of my colleagues do.

Those who have followed my comments on the sundry blogs throughout the Autism Hub will have noted my dual scepticisms, about the current definitions of autism, and the genetic etiology of the same.

It is time for me to set down my reasoning for the latter at least (the former having been covered before, although it does have some bearing on the following).

It is vitally important for the future of all of us (Autistic and ‘neurotypical’) that the common misconceptions about the genetics of autism are cleared up. This is not just because of the inaccuracy of all the reporting, there are significant reasons why it must be countered.

I hope I do not have to go back over the whole sordid history of Eugenics, the institutionalisations, the enforced sterilisations, (in otherwise ‘liberal countries) leading inexorably to the T4 extermination programme in Nazi Germany in order to point out the evils of this ideology.

However the new millennium seems to have brought in it’s wake an increasing threat of it’s revival, no it is more than a threat it’s has had it's resurgence as a new reality.

Let us go back, in the Uk at least to 2000, and the widely reported attempts of a British couple to select the sex of there embryo in order to ensure a female child.

Guardian News

At the time the Human Fertilisation and Embryo Authority refused this request as it was outlawed, except on medical grounds.

There we have it, “on medical grounds” a slippery slope if ever there was one as we will see.
Fast forward to June 2006 where it was reported that the University College Hospital, London were reportedly seeking permission from the same authority for their IVF clinic to discard all male embryos in families with a history of autism, in order to ensure that no more autistic children were born.

Daily Mail

I hope I do not have to point out the crudeness of this instrument, which must rank in infamy along with King Herod’s solution to elimination a rival to his kingship by slaughtering all male born children. Even if it were desirable to eliminate autistic embryo’s this strategy would be eliminating far more potentiality than that, given that there was no evidence whatever to give even an estimate of the risk.

I wrote to the HFEA at the time, and in return received assurances that no such application had actually been made. So was this an example of journalistic licence and false reporting, or was UCH using this as an opportunity to sound out public opinion first? I do not know.

Fast forward again to the Human Fertilisation and Embryology Act of 2008 which contained several changes to the regulation of pre implantation genetic diagnosis including a requirement for the HFEA to be satisfied that there is a significant risk of the resulting child developing a serious condition, before permitting it’s use.

Significant risk eh, but then what is the risk, and never mind the risk even then is it ethical or even scientific?

Professor Simon Baron Cohen of Cambridge Universities Autism Research Centre, has also been siezed upon by the press to put the counter argument, somewhat weakly and mistakenly in the form of suggesting that this form of genetic selection could end up costing the positive traits of autism too.

I say weakly because that form of argument merely invokes another as to whether one form of autistic person is more valuable than another, which goes right back to the roots of genetics and infers that intellectual impairment is still cause enough for an individual not to have any right to be.

As if the still unresolved spectre of pre implantation diagnosis were not enough, the genetic discrimination is more real than that as reported in this article, where autism in the family is considered


No this is not hypothetical it is actual discrimination enough to refuse donor eggs or sperm from ‘infected’ parents. If that is the parents, where does it leave us as diagnosed individuals if we were to volunteer.

I am not going to go down the side road into the ethics of IVF, whether you support it or not does not hide the fact that it is being used to make eugenically based decisions on the worth of future human beings.

From that it is but a short step to the next stage, that of deliberately aborting suspected autistic foetuses, a fate already suffered by those in other genetic minorities, such as Trisomy (otherwise known as ‘Down’s’)

So to the science itself ...

Firstly I will dispose somewhat cursorily with Professor Simon Baron Cohen’s hypothesis as to the etiology of autism. I do not believe it, not because it is necessarily wrong (that remains unproven) but because the methodology is suspect, in that the whole of it is grounded upon the historic diagnostic ratios favouring more diagnoses amongst boys to the ratio of 1:4.

My argument with that is, that it is simply social artefact, an recognition of the phenomenon that more boys are diagnosed, for whatever reason, than an indicator of any prevalence. I have to remind that counting the numbers of diagnosed individuals is a measure of incidence, the rate at which a particular condition is recognised during any time period, it does not guarantee that this rate equals the prevalence, that is to say the true underlying number of individuals alive at any one time with the condition, be they diagnosed or not.

We can already see the drift away from the once commonly held belief that as much as 75% of all autistic individuals are intellectually retarded, in favour of almost the opposite statistic (and I can give a citation if needed) through the mechanism of diagnostic shift in favour of diagnosing autism across the notorious ‘bell curve’ of intelligence.

In legal parlance there is an element of doubt in Professor Baron Cohen’s hypothesis sufficient to regard it as no basis on which to make legal decisions regarding PGD, donor worth, or termination. That should be enough.

Then to the genetics of autism itself. For as long as this new eugenic argument has been raging, the notion of autism’s hereditability has been raging.

In support of my position, I intend this time to quote directly and at length from a small selection of scientific papers on the subject.

Before I do, I have to state my bias, and that is in my observation there have been so many of these papers, none of them conclusive, and some of them contradictory, to believe that there is any simple gene that switches autism on and off, notwithstanding if Prof Baron Cohen does ultimately turn out to be correct genetics may not be enough in itself. Whether he is right or not, there is more to etiology of any condition than genetics alone, another rabbit hole I could go down in so far as explaining why.

In 2002, Badner and Gershon in Molecular Psychiatry 7(1) pages 56-66. State in the abstract

“Although the concept of meta-analysis of multiple linkage scans of a genetic trait is not new, it can be difficult to apply to published data given the lack of consistency in the presentation of linkage results. In complex inheritance common diseases, there are many instances where one or two studies meet genome-wide criteria for significant or suggestive linkage but several other studies do not show even nominally significant results with the same region.”

Okay it is disengenous to selectively quote from abstracts as the full title of the paper,
“Regional meta-analysis of published data supports linkage of autism with markers on chromosome 7.” reveals that they believe that contrary to their advisory, they did go on to state that there methodology at least suggested a link in a particular region

“One possibility for resolving differences between study results would be to combine an available result parameter of several studies. We describe here a method of regional meta-analysis, the multiple-scan probability (MSP), which can be used on published results. It combines the reported P-values of individual studies, after correcting each value for the size of the region containing a minimum P-value. Analyses of the power of MSP and of its type I error rates are presented. The type I error rate is at least as low as that for a single genome scan and thus genome-wide significance criteria may be applied. We also demonstrate appropriate criteria for this type of meta-analysis when the most significant study is included, and when that study is used to define a region of interest and then excluded. In our simulations, meta-analysis is at least as powerful as pooling data. Finally, we apply this method of meta-analysis to the evidence for linkage of autism susceptibility loci and demonstrate evidence for a susceptibility locus at 7q.”

I do not think I was wrong to select the first paragraph of the abstract for special attention though as it sums up the correct atmosphere of scepticism in which any author should approach their paper. There is a lot of difference between the suggestion of a profitable line of enquiry and a foregone conclusion, that is where the press consistently get it wrong whenever any new paper is announced.

However this was an old study, so let me move forward to 2006 again.

In the same journal 2006 Jan;11(1) pages 29-36 Trikolinos et al report (again in a meta-analysis, that is to say a study of many papers)

“Autism and autism-spectrum disorders exhibit high heritability, although specific susceptibility genes still remain largely elusive. We performed a heterogeneity-based genome search meta-analysis (HEGESMA) of nine genome scans on autism or autism-spectrum disorders. Each genome scan was separated in 30 cM bins and the maximum linkage statistic from each bin was ranked. Significance for each bin's average rank and for between-scan heterogeneity (dis-similarity in the average ranks) was obtained through Monte Carlo tests. For autism, data from 771 affected sibpairs were synthesized across six separate genome scans. Region 7q22-q32 reached genome-wide significance both in weighted and unweighted analyses, with evidence for significantly low between-scan heterogeneity. The flanking chromosomal region 7q32-qter reached the less stringent threshold of suggestive significance, with no evidence for low between-scan heterogeneity. For autism-spectrum disorders (634 affected sibpairs from five separate scans), no chromosomal region reached genome-wide significance. However, suggestive significance was reached for the chromosomal regions 17p11.2-q12 and 10p12-q11.1 in weighted analyses. There was evidence for significantly high between-scan heterogeneity for the former region. The meta-analysis suggests that the 7q22-q32 region should be further scrutinized for autism susceptibility genes, while autism-spectrum disorders seem to have quite diverse linkage signals across scans, possibly suggesting genetic heterogeneity across subsyndromes and subpopulations.”

The key word is in the title of the paper Heterogeneity ... “A heterogeneity-based genome search meta-analysis for autism-spectrum disorders”

Again the study does no more than point out the suggestion of profitable research in specific Chromosonal regions not all of them (if my reading is correct) in the same region as suggested by the previous paper although there is some corroboration for it. The rider on the investigation bears repeating “while autism-spectrum disorders seem to have quite diverse linkage signals across scans, possibly suggesting genetic heterogeneity across subsyndromes and subpopulations.”

This is still an old paper, and there has been a lot of research in the meantime, which ought by now to have discovered the salience of this region 7 by now, but has it?

I will quote both the abstract and the executive summary of a more recent paper

Grigorenko EL. Pathogenesis of autism: a patchwork of genetic causes. Future Neurology. 2009;4(5):591-599.

The abstract:

“Autism spectrum disorders (ASDs) are relatively infrequent but are devastating developmental conditions characterized by marked deficiencies in social, communicative and other behavioral domains. It has been known for a substantial period of time that these disorders are genetic in nature. However, elucidating the specific mechanisms of these disorders has been difficult. A major reason for such difficulty is the recognized genetic heterogeneity of ASDs. Specifically, many genetic mechanisms related to structural variations in the genome have been reported as possible genetic causes of these disorders. This review briefly exemplifies these genetic mechanisms, presents a concise overview of the evidence for the genetic basis of ASDs and provides an appraisal of the specific structural genetic variants thought to contribute to the pathogenesis of these complex disorders.”

And the executive summary:

"• Autism spectrum disorders (ASDs) form a group of severe developmental conditions, characterized by deficiencies in social, communicative and behavioral domains of functioning.

• Early descriptive presentations of cases of ASDs anticipated the role of genetic factors in the etiology of these disorders. These hypotheses were investigated in twin and family studies of probands with ASDs; these disorders are now viewed as developmental disorders with the highest degree of genetic control. However, these nonspecific indicators of the presence of genetic control have been difficult to convert into a clear account of the genetic causality of ASDs.

• The currently dominating view of the genetic bases of ASDs acknowledges the high degree of genetic heterogeneity of these disorders that manifests itself by recruiting both rare and common genetic variants, as well as heritable and de novo genetic mechanisms.

• Although the specifics of the contributions of all these genetic mechanisms are unclear, it is possible that the impact of the rare variants is more severe and less specific, whereas the impact of the common variants is more defining and related to specific facets of ASDs."

Note again that key word I have highlighted “heterogeneity” this more recent review quite clearly acknowledges that since 2006 the complexity of autism as developmental trajectory. In essence it agrees with what I have intuited since the beginning of my awareness of genetic research, that there are many roads to Rome, in that autism “manifests itself by recruiting both rare and common genetic variants, as well as heritable and de novo genetic mechanisms”. Did I read “de novo” correctly? That is to say that not all genetic susceptibility is hereditable, the recent research positing the role of older parents may have some bearing on that, I don’t know, it would suggest a further line of enquiry.

Turning briefly from the scientific to the worst of the UK’s 'gutter press' we read how the press reacts to genetic research

“A NEW scientific study could result in the screening of unborn babies for autism. Why is the development causing concern among the parents of autistic children and even the expert who headed the study?”

Yes it is our old friend Professor Baron Cohen in the frame again. Scientists and researchers do indeed need to be careful how they handle the press when they find themselves in the spotlight, not all are as astute as the Prof Baron Cohen in anticipating the response to their scientific findings, and indeed the Prof has been caught out before in the way that the pseudo science has tried to enlist his findings in support of dubious therapy.

Again I will leave it to the press to enlighten us further 'Miracle drug' called junk science
Powerful castration drug pushed for autistic children, but medical experts denounce unproven claims Well the scientists (those who are worthy of the name at least) are getting better in the social responsibility stakes, as I come absolutely up to date with an extensive quotation from a study which is as yet only available online.

Freitag CM, Staal W, Klauck SM, Duketis E, Waltes R. Genetics of autistic disorders: review and clinical implications. European Child and Adolescent Psychiatry. 2009 Nov 26. [Epub ahead of print]

Abstract

"Twin and family studies in autistic disorders (AD) have elucidated a high heritability of AD. In this literature review, we will present an overview on molecular genetic studies in AD and highlight the most recent findings of an increased rate of copy number variations in AD. An extensive literature search in the PubMed database was performed to obtain English published articles on genetic findings in autism. Results of linkage, (genome wide) association and cytogenetic studies are presented, and putative aetiopathological pathways are discussed. Implications of the different genetic findings for genetic counselling and genetic testing at present will be described. The article ends with a prospectus on future directions."

And it is worth quoting the conclusions of the review further:

"Implications for genetic counselling

Genetic counselling for AD is challenging, as phenotype and genetic mechanisms are complex. There is a strong need to carefully assess the children and the family, and to exclude all known medical causes of the disorder. The aim of genetic counselling is to provide information to parents and children, and to estimate the recurrence risk of the disorder. Genetic counselling further is concerned with providing psychologically oriented counselling to help individuals to adapt and adjust to the impact and implications of the disorder in the family. With regard to AD, families as a rule wish to know the recurrence risk of the disorder. From the results of family studies,
a sibling recurrence risk of around 5% (2–8%) can be estimated for idiopathic AD. (266)

If a known genetic cause of the disorder is established, however, a very different recurrence risk might be present in the individual family. For dominant single gene disorders with full penetrance, like TSC, a sibling recurrence risk of 50% is present, if one of the parents carries the disease-causing variant, that is, if the variant is not a de novo mutation. In case of recessive single gene disorders, like SLO, the sibling recurrence risk is 25%. If a child suffers from FRAXA, the recurrence risk in a brother is up to 50%, and a sister will become a carrier in up to 50% or might be mildly affected. On the other hand, in the presence of cytogenetic abnormalities like a chromosome 15q11–q13 duplication or duplicated inversion, the recurrence risk is similar to the population prevalence, as most duplications and inversions arise de novo during meiosis.

The limited clinical validity of genetic testing for autism and the related ethical concerns have recently been delineated by McMahon et al. (267) It seems of particular relevance to keep in mind the complex genetics and uncertainty principle as well as the right of the individual and the family not to participate in genetic testing.

Future directions

The presented association studies have shown the difficulties in finding disease-causing genetic variants based on a small number of microsatellites, SNPs or haplotypes. High-density SNP association studies might become feasible in the near future, which might enable researchers to assess linkage patterns and haplotype structure at a genome-wide level in different populations and choose the relevant tagging SNPs for adequate haplotype association studies. In addition to more sophisticated association technology, functional analyses of new variants in coding regions should be brought forward. Gene–gene interactions and epigenetic mechanisms additionally seem to be of relevance in AD. (187)

Conclusions

Despite the high heritability estimates for AD, only a few genes increasing the risk for idiopathic AD have been elucidated. As the disorder shows a high phenotypic variability and additional genetic heterogeneity, it is of crucial importance to, first, clearly define the phenotype, especially with regard to the broader spectrum of AD and to the differential diagnosis of other pervasive developmental disorders like Rett syndrome, and, second, to perform a detailed cytogenetic analysis in every individual with AD and additional testing for FRAXA in individuals with AD and mental retardation in clinical and research settings. With regard to molecular genetic studies on AD, promising new technologies have been developed, and larger samples with higher power.

To put it into plain language, despite the amount of research, and the number of papers published, often with a press fanfare, the current state of knowledge is not sufficient to warrant the less cautious “scatter gun” approach being taken by genetic counsellors, IVF consultants and fringe medical practitioners.

To conclude with another quotation, from January 2009

“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."

Yes it is one of mine.

a little further reading:

• Critical thinking is not a bad thing.
• Duhem, Quine, Wittgenstein and the sociology of scientific knowledge: continuity or self-legitimating?Dominique Raynaud
• Whichever way you look at it, it’s still Autism

Genetics and Eugenics: Time for action

As the scurilous and effervescent Socrates has suggested, I am working on something at the moment.

Well this is just an interim statement to say that my first position statement (why do they always have to be position statements, it sounds so pompous) on this particular issue first broached by my colleague Mike Stanton, and more recently re-iterated here, will have it's gestation later tonight, it will long and wordy, and in a new departure for me, quote extensively from peer revieved 'science' - shock horror.

I believe that it takes more than a few people or even a crowd standing around with banners chanting, to effect a real campaign, of which the public protesting is only one part.

That is why I am researching this carefully, with a view to martialing a far wider campaign front than the 'usual suspects' involving a range of organisations, including some traditionally regarded as our enemies if they will come on board.

I am just waking up after the disruptions of the Christmas period, the new year not really beginning publicly until tommorow, 4th of January.

This is my first priority, before even the academic necessities I also have to look to if I am to continue my own researches.

I need to take a break now, before I complete what I have started. I just want to say this, any successful campaign needs to be planned carefully, it ought not to go off 'half cocked'.

I might also add before leaving that some voices will be absent from this debate, you can call it censorship if you will and that is a nasty word, but you will not see Harold Doherty, John Best, Jonathon Mitchel or their maladjusted allies unless they can constrain themselves and find something sensible to say, this is a serious debate, about serious issues not the usual bloggers 'Punch and Judy'.

The same goes for my allies, I would prefer a more sober posting style (perhaps the pot calling the proverbial kettle here) devoid of scatology and inventive invective.

Parliamentary language only please ......

Being Prepared

I am not an "end of the world as we know it" died in the wool survivalist inspite of owning a 4WD, but a number of events over the past year or so have shown up the need to be prepared.

Firstly I had to evacuate after a fire, and did not take a lot with me, I was not much better prepared the second time either when I left altogether quicker than the first time forgetting my keys to let me back in again when it was all clear.

I now have a fire evacuation bag packed with the most essential things packed, including spare keys. It contains insurance documents, cheque book, essential clothing and all those essentials I would otherwise have to buy, and what is in it is not based on any hypothetical shit hits the fan list, but on what I had to buy last time.

I could if I had to, leave my flat naked like Archimedes straight out of the bath, grab the bag which is always by the door, and be able to make myself decent in the meantime from the contents of the bag.

However my more recent emergency showed me that is not preparedness enough, because I was faced with a different kind of emergency where taking that amount of junk was simply not appropriate. So I have resolved to pack a hospital emergency bag now, which contains the basics you need for a short stay in hospital, pajamas, slippers, clean underwear (yes I know - as your mother always told you - you are supposed to be wearing it, but you will need a change) basic wash kit, and a cheap novel aswell.

Apart from that long experience has taught me to be prepared for other emergencies such as power outages, Having grown up in an era which included the miners strike and the three day week, I always have a supply of candles, hurricane lamps and fuel, and camping stove. I actually have more than this in that I have my usual camping gear as well which includes chemical toilet, 12v gel battery, lamps and solar panel.

I have to admit however I don't yet have any defense against the proverbial Zombie attack, that is something I shall have to work on :)

My journey to Wales, Will it happen?

If I had not been derailed by my hospital stay I had planned to be driving off to Wales today. However looking outside at the icy roads and the fog, I am not sure I would not have changed my plans anyway.

I am pretty determined to go tommorrow which will mean starting early in the morning to get enough daylight for photography, but again I think I have to pay regard to the weather.

I had a long conversation with my brother about many things yesterday. My recent scare was a scare to him too, being as he is the one who will have to pick up the tab if anything happens to me.

We talked of this old story in the Arabian nights, where a guy sees the grim reaper in the Marketplace looking at him, so he gets on his horse and escapes to the furthest reaches of the kingdom, only to meet death there, who expresses surprise that he had seen him so far away in the morning when he had an appointment with him elsewhere.

In other words I have more chance of coming a cropper on the roads than succumbing to a heart attack, so it is a matter of common sense and taking another opportunity to visit Wales during the Christmas break if the weather is really against it. It's not snow that bothers me, but ice and fog, and also being sure that the beta blockers I am on, do not impair my driving in any way.

I'm driving round to the shops later to fill up on diesel. It may be I don't get so far as Wales tommorrow and will go for a shorter journey instead.

Reports of my demise have been greatly exagerated (a close run thing)

You will note that my recent postings have had family very much in mind.

I will now relate what ultimately happened to my Dad as a preamble to what has just happened to me.

In August 1985 at the age of 58 my dad was at his ladyfriends house hanging a picture when he experienced chest pains. He thought nothing of it at the time, but the pains continued throughout the afternoon. In the end it was so severe that he called an ambulance and was rushed into hospital. He had experienced a heart attack out of the blue, a week later he was dead of a second massive heart attack.

Well Sunday Evening I was sitting in my chair over the computer and I experienced the combination of chest pains and my heart beating very rapidly and hard against my chest, as if I had just run up a flight of stairs.

Now I am not actually unused to heart problems, I have been twice to emergency before, first time with an irregular pulse and the second time with the combination of an irregular pulse and chest pains. In each case I was inspite of the discomfort able to walk to emergency, and although I did have an irregular rhythm it was diagnosed as 'benign' and a subsequent referall to a cardiologist assured me of that.

What I felt on Sunday was different, it didn't feel irregular it was too rapid. Normally if you have a rapid heart beat that is just part of the bodies flight or fight response, brought on by some anxiety, if you fly with it, that is to say get up and go for a walk, it will settle down. Well this did not, I could not even walk about the flat without it getting worse, and there was the chest pain too and it was not going away any time soon, so I decided it was time to call an ambulance.

By the time I got into emergency (and it is nothing like you see on television,if you are brought up on a diet of casualty, ER, and House it is mostly boredom and nothing happening at all) my heartrate had slowed down somewhat and by the time I was hooked up to the monitor there wasn't anything unusual or scary to see, which was reassuring. However the pain still needed investigation and I was for a chest X ray, In addition the Dr wanted to keep me in, because the only way to establish beyond doubt if I had just sufered from a heart attack would be to carry out a blood test which they have to wait a certain number of hours for whatever is supposed to happen to happen before they test for it.

I then had a 3 hour wait on my own in the cubicle while they found an empty bed. (the usual situation at this time of year, with the cold snap there are a lot of falls and a lot of respiratory diseases.

Well the arrangement of the wards is into 4 bed bays and at 54 I was by far the youngest in my bay. What was rather traumatic for me, apart from worring about myself was the flashbacks that the guy next to me was causing. From listening to what the Dr's and his relatives were saying, and the fact that he was on oxygen and clearly having breathing difficulties, he was a man of 71 with chronic emphysema, complicated by pneumonia, and he was not well at all. It reminded me all too much of my mum's last hours in hospital in very similar circumstances, it also showed me in retrospect how little chance of survival my mum had, when they brought her in, the dr's suspicion was probably right she was in the terminal stages, because she was in a lot worse condition than this unfortunate gentleman, who during my stay was showing signs of improvement and stabilisation.

Unfortunately for me, quite apart from the poignant reminder of less happier times for me, the noise of his oxygen was keeping me awake for the two nights I was in.

I could complain that an autistic with sensitive hearing should not be in that situation, but the truth is, in an emergency you need a bed, wherever it is and if your life is at stake (as it might have been) you have to go with it.

Well in truth this wasn't the worst at all, the worst was being brought in unprepared late in the evening by the time you have a bed, and missed all the meals and usual hospital rounds. Then there are the bright lights, and other sundry beeps and noises, and above all not knowing what happens next.

I would have appreciated knowing at what times I would be disturbed for monitoring temperature and blood pressure, what times the dr's come round, what time the meals were. I was left to figure out for myself how the adjustable bed worked, and where the emergency call button was, in fact I didn't find that until the middle of the next day.

Another annoying thing was the cold. I was just left on this bed initially in a hospital gown and single sheet, there wasn't even a pillow, I had to ask several times before I was brought one, and is little wonder every time a nurse asked "have you any pain" I could say "Yes my shoulder" For the first night I was freezing. Only the next day when I was up and wandering around in my gown did the nurses find me a pair of pajamas and then some extra blankets.

The hospital didn't get it right, they did not take the blood test at 7 am in the morning as they were supposed to, and of course it didn't come to light till after the Dr's ward round. I had to wait till 4 o clock, which was some 3 hours after I had been assured that they were coming soon. Worse that that I had been told that if the test was Ok I could leave that evening. (I wasn't really keen on staying as I was getting extremely worried about my flat being left in a hurry)

Anyway I had been told that the test results should take a couple of hours, so I duly started counting the minutes. Needless to say well over two hours later the results were not available. Indeed I was eventually told that even if the results did come in that evening I would still have to stay in overnight, because the Dr's had gone and would not be back till the morning to officially discharge me (if all was fine)

Fortunately I had some extra blankets by this time, and had been fed at the proper mealtimes, having had nothing but sandwiches to eat the day before as I hadn't yet eaten at home when I called the ambulance)

Well I couldn't sleep and spent a lot of time pacing up and down the corridor outside. I was feeling physically better by that time, normal heart rate and B P so at least I could get up and wander about so long as I did not wander off the ward altogether.

The Ward sister told me before she went off duty for the night sister that the results had come back and she could look on the computer for me. I was a bit nervous in case they were not what I wanted to hear, but fortunately they were clear, so at least I could spend the rest of the night in some certainly that I would be able to go home the next morning.

And so I was pretty eager to get the silly needle out of my arm (put there as a matter of routine in case I needed anything intervenous, but made life rather uncomfortable) and to get dressed.

WEll early in the morning I left, they informed me they had emailed my GP, so I did not need to wait for a letter to take down to the surgery.

So I went home, called in the surgery on the way and booked an emergency appointment for later on.

By the time of the appointment they hadn't got the email yet.... but I was able to explain what had happened, because I was concerned that this might happen again, and what was I supposed to do. He prescribed me beta blockers (which I have had before, for occasional use, though not having felt the need for some time, my prescription had lapsed and was out of date.

What should I do if the same symptoms re-occured, I asked. Call an Ambulance he said, that is what he would do in the same circumstances, the fact that it may have been a false alarm this time does not mean it will be the next, and far from being worried about calling an ambulance uneccesarily I should be concerned that it always is always better to haved called one and the symptoms turn out not to have been a heart attack in retrospect, than to have had misgivings about calling one and died as a result.

Not all research is cause or cure

Here is a report of a recent piece of research undertaken at my Uni.

No best approach to education for all children with autism

There is no one best approach that can be used in educating all children and young people with autism, according to a report by researchers from the University of Birmingham’s Autism Centre for Education and Research (ACER) and St. Patrick’s College Dublin, published today by the Republic of Ireland’s National Council for Special Education (NCSE).

The report is an international evaluation of strategies employed in educating children and young people with autism, based on using a set of rigorous guidelines to evaluate the latest studies from around the world, published between 2002 and 2008. It also includes data from policy and best practice guidelines from the United Kingdom and Ireland.

Dr Sarah Parsons, from the University of Birmingham says: “Practice has outpaced research. Although experts agree that a range of special and mainstream provision is important for children with autism, there is no clear evidence from research to help families and practitioners decide which kind of school will be best for their child.”

The report reveals major gaps in the research base for interventions commonly used when working with children on the autism spectrum. There is a particular lack of research regarding good provision for secondary students and those in post-compulsory education.

“Researchers need to address these gaps in the future and ACER has plans to develop research bids which focus on some of the key areas highlighted in the report,” Dr. Parsons stresses. “There is a growing consensus from expert opinion as to what constitutes effective practice, and several sets of guidance have been produced by different working groups in education and health which are very helpful, to parents and others, but these need to be complemented with evidence from robust research studies.”

The evidence base for good practice in transition between settings and stages of schooling needs strengthening, the report also reveals.

The new report will be relevant to practitioners, policymakers and families worldwide. It will be available on the NCSE Web site (http://www.ncse.ie) from today.

You see there is more to research than the bogus science too oft reported and debated in this corner of the blogosphere.

Congratulations to Ari Neeman BTW, we need someone who appreciates the social model of disability to counter the bull being spread by NIH in the USA.

Laurentius in Winter.

I don't know how many people are familiar with the "Lion in Winter".

It depicts the troubled relationship between HenryII, his wife and their rebellious sons.

Well sometimes Christmas back home was like Christmas chez Henry as depicted in the movie.

To be sure I have some distant memories of childhood Christmases, waiting for Santa to come down the chimney, Christmas trees with the same baubles year in year out, and wondering where they went. (The tree in a bin and the baubles back in a cardboard box in the loft kept well out of reach of childish hands)

It is however the later Christmases of adolescence and early adulthood I remember most though even though they were one long haze of alcoholic overindulgence and family squabbling, it is no exaggeration to say that knives were drawn on one occasion (just like in the movie)

And when my dad was no longer around my brother and I would fight it out instead. There was one occasion when we were all drunk, my mum included, and a fight broke out between me and my brother, fisticuffs, grappling that sort of thing. Now bear in mind my mum was disabled and used a wheelchair by this time. She managed to stand up and then toppled onto the floor, she was too drunk to remember that she couldn't walk. Well by that time my brother and I were also on the floor, and the three of us just fell about laughing, the whole thing was so absurd we forgot whatever it was we had just been fighting about.


Things changed however after my mum had become so disabled she could not cook anymore. I remember trying to cook a proper Christmas dinner under her supervision (she was a trained and qualified cook) but it was something of a disaster.

After that we decided (apart from a few Christmas decorations) that we would not celebrate Christmas in the traditional way anymore and would instead take a packed lunch out for a Christmas picnic somewhere away from it all.

From 1987 onwards that away from it all had become regularised into Lake Vyrnwy in Wales, and that is where I still go every Christmas, this year will be no exception.

In case you have forgotten watch this space.

"It is a tale told by an idiot, full of sound and fury, signifying nothing"

If I have had it bad I should look at my dads life.

Before the second world war he had already lost his own dad, a drunk, who drunk away the profits of his bootmakers shop. Before long he was to lose his mother too, a diabetic. He always blamed himself for her death, because her last request was for a bottle of stout, which my dad duly delivered to her. He was sure it killed her.

After that he spent a life on the move between his elder sisters and brothers, heavily disrupted by the war.

By the age of 12 he had already left school, so many children were being evacuated he figured they would never notice if he stopped going.

You will notice he spent his war in Coventry, and experienced all the bombing and the Blitz.

I recently saw a play at the Belgrade Theatre entitled one night in November which tried to recreate those events. (curiosly I was a refugee myself when I saw that, having been temporarily driven out of my flat by fire)

Well my dad was driven out by a bomb. Later on during the war he got into uniform for the first time as a boy messenger for the fire brigade, dangerous work, and by the end of the war he was called up and posted to the middle east, where during the troubled post war era he served in Palestine. It wasn't any different then, the equivalent to a posting to Iraq today, he had to carry a concealed sten gun whenever he got any leave, and was once mistaken for a terrorist when he forgot the password to get back into camp.

To top it all, he was probably autistic, one of us, Is it any wonder he turned to drink?

I am not making any casual retro diagnosis on my dad. I know sufficient of his character, his reactions and bearing to see myself in him, and he had enough contact with the psychiatric profession in his life, with two stays in mental hospitals.

His diagnosis eventually was personality disorder, but I think had he lived a little longer to see my diagnosis, he would have been rediagnosed with AS.

In any case he did not realise what a stigma personality disorder was in itself, but insisted he was not mentally ill.

My mum on the other hand did not understand these distinctions at all, she could not understand why he acted the way he did and called it mental illness.

She used to tell us children there were two daddies, a good daddy and a bad daddy and that the bad daddy could not help himself, while she put up with the beatings and the smashing of furniture and all the other fun of the fair that made up our normality.

I later joined in the smashing of furniture myself, why not, it was really crazy sometimes with things flying through the window, including an antique 'marble' clock. I had a recent conversation with my brother with us trying to recall who threw what and where :)

From that you can conclude that my mum had a difficult time, never mind what later became of her when she contracted rheumatoid arthritis and finally left him, to be looked after by me, of whom she was also sometimes afraid, because I had not given up the furniture smashing habit. We argued over many things, including disability politics, and when I got worked up I went out into the garden and just broke up whatever was out there, (helped to get it into the bin anyway)

My mum feared I had the same 'disease' as my dad. After some dealings with psychiatric services I decided to leave that alone, and never sought any more "help" until after she died. I was wise enought to fear the sort of lable I could end up with.

Well my dads behaviour was none improved by drink. He was a nice enough bloke when sober, but once he lost his temper, it was off down the pub, come in rolling drunk and prolong the argument all night sometimes or until he became insensible.

Now I seem to have painted a very unpleasant picture of my dad, but the truth is more complicated than that.

He was fundementally a decent bloke, he was just dealing with forces he did not understand. He was well liked by his workmates, although he hated his work, it was a noisy smelly factory that caused continual stress because of his sensory sensitivities, something that allowed him to understand me somewhat better when I reacted spectacularly to things like the toilet flush, or the vacuum cleaner. He took my side in school disputes explaining that I was reacting in pain to noise and that I could not help it.

He was a singer and a musician, although in frustration he more than once smashed his instruments (he ought to have done that on stage and one upped Pete Townsend) and he was a keen photographer, my best days with him spent cycling and walking in the countryside with a camera, later spending the evening in the dark room developing the results. At least that gave my mum some temporary peace from the both of us.

So what can I say. Is domestic violence forgivable? Well probably not to the extent that it should go unchallenged. My mum later worked at a refuge for 'battered women' as it was termed then, she turned that adversity into strength and that formed the groundwork of all her later voluntary efforts, deep down she loved my dad, they were just incompatible and he was thoroughly conditioned by a false expectation of social norms to understand what domestic life should be like. He had nothing to model it on, but the movies, and to him the man should be master in his own home, and was entitled to chastise his wife, a fundementally victorian morality.

His dad was a Victorian, who spent his first 25 years in the reign of Victoria an exact contemporary (and companion) of my great grandad on my mum's side of the family. This is his picture, he looks quite avuncular, he was probably drunk at the time, rumour has it that he was drunk at my dad's christening, he would have given him his own name 'Benjamin' but all he could muster was Ben,.


Even before he married my dad was known as eccentric and difficult, my mum's parents were against the marriage but they relented and she was married at just age 19, hardly experienced in the ways of the world, is a disaster looming of titanic proportions.

What can I say about my dad's drinking? I hardly know anyone who drinks at all who does not drink more than the miserly recommended limits at least once or twice a week, I am no example to criticise in retrospect, but it has to be said my dad took to drinking as a refuge from domestic life

From his perspective he could not understand women, he had not had much experience of them before my mum other than his sister's dominating influence in his life. His first sexual experience was with a prostitute in the army, something my mum did not forgive in him when he revealed that during one particular drunken row. There are more dark secrets there, of marital infidelity. My dad could be a jealous man,and was jealous that other men (his friends) found my mum attractive and easy going. My mum found friendships in general a lot easier than my dad, people just liked her and some more than that, she had been accused often enough that she the accusation became reality in the end, but then by that time the marriage was all over, and my dad was also looking for a replacement in bed.

The army was his only stability, and he wanted to run his home on army lines when he got married, and my mum was too independant for that she had her own ideas.

Things could have been very different, if they both had a greater understanding of things that simply were not known then in the foreign country of the past.

My dad had a life every bit as difficult in it's own way as my mum's shortly after they met he spent months in hospital recovering from Meningitis, illness was no stranger to him, he had had childhood diptheria too.

My mum also had a disrupted family life, during the war she had been evacuated to no less than 3 different locations, and ended up moving back into Coventry with her Aunt because there was no room at home, I don't think she had much idea of what family life should be like either and was somewhat mesmerised by my dad's charismatic mask. He spoke foreign languages (Arabic, Polish and German) he played in Jazz bands, was a friend of Ronnie Scott , George Melly and Humphrey Lyttleton, going down to London and playing on the river boats where:

"Everybody knew everybody. We all squeezed on to a little boat which chugged up-river to Chertsey. At the locks there was jiving on the tow-paths. Beryl Bryden swam to enthusiastic cheers. The music and the moving water, the bottled beer and the bare arms, melted into a golden haze. The last defiant chorus from the band as the ship turned in midstream before heading for the pier in the warm dusk sounded really beautiful". and seemed to her to be so sophisticated." (George Melly)

He seemed so sophisticated, and Beryl Bryden quite shocking as she recalled.

Well was it worth it? If it was not there would have been no me here to tell the tale!

All in all my dads life was a tragedy of Shakeperian proportions, such unfilled talent that he never had the breaks he deserved and wanted more than anything that his children should have a better life than him and never have to endure meaningless toil in a factory. We were part of the tragedy too, because neither of us suceeded at University in his lifetime, he saw us becoming increasingly distanced from him, and his final diaries some of which I have read, others which my brother has and destroyed because he thought they would be too painful for me to read, tell of his alienation, and his fears for me, that I would never be able to make it in the world of work at all, I would never marry and would end up on the streets.

I could go back and say that for all I know his Dad led a tragic life too, there are suggestions of family difficulties going back yet another generation, and it is of course impossible to speculate what traits of autism, my grandfather carried, suffice it to say, that among his six children, my dad was not the only odd one. Maybe I shall save that for a later chapter ......

On the psychiatrists couch

My recent classic PTSD reaction to a recent posting on Facebook, bringing back painful flashbacks of something far in the past, has given me to much reflection, and my blog is about to take a somewhat dark turn as I confront and try to out the many demons of my childhood that still have the power to possess me with fear, shame and emotional pain.

Now this is still going to be an autism relevant blog, but what it will not be is a blame the parents blog, because I know that ones childhood takes place in a social context beyond the family where people are effectively conditioned by class, upbringing, education, media and general cultural ethos into a set of beliefs embodied in the zeitgeist.

It is my belief that many parents turn to biomed as a reaction to the evils of the Bettleheim era, and to many genetic implication is still a form of blaming the parent.

Well I am also aware, and have been since my diagnosis that there are a variety of perspectives on everything. I see it from the inside in one way, my parents saw it in another, and people outside the family looking on at my parents often difficult marriage saw it another, taking sides as they saw fit.

That is why it is very difficult for me to embark on what I am about to do.

Some of it is already hinted at in the autobiography I provided back in the days when a geocities page was the thing to have. I wrote that post diagnosis as a personal journey into my past recontextualising in the light of what I had recently learnt of myself. Perhaps I was wrong to do that, but it is too late now that so much of my life is already out there for people to pick at and come to there own conclusions, coloured by whatever experiences they have had and how they look at the world in general.

It has been the basis of a disagreement I came to have with an author, who gave my web pages added publicity by including material from them in a book. I felt later that there was a danger that by saying some things about my dad that could be more wideley read than the internet, might rebound on me because I feared the hostile reactions of people who were my dad's friends, and who had seen him in a more sympathetic light than I was forced to view during family rows and disputes.

I mistakenly believed by allowing my words to reach a wider audience that might enhance my prospects of following the likes Of Donna Williams, Wendy Lawson, and Lianne Holiday Willey and becoming a writer myself.

Well let's just say I was naieve at the time, and was mistaken. I have since come to the conclusion that if I have any ambitions as a writer left, it is to be a scholarly writer and not a sensationalist autobiographer.

Which is why it is going to be so awkward now to turn back to some of those things in my childhood, inevitably related to my autism and other 'disabilities' or 'difference'

To deal sensitively with the outside as well as the inside perspectives, and not to lay the blame on anyone for my parents sometimes rocky marriage, or the still traumatic events of my schooldays which have been revisited to me last night.

These things happened, and I cannot be silent about them forever. I make this turn in order to excorcise those demons.

The link from today's blog may be puzzling some, what it has to do with the Coventry Music scene, well the article mentions includes a picture of my dad lifted from my former geocities (RIP) web site, which shows that local people, my dads friends amongst them have read it, and I feel sorry for what I said about him and want to make some ammends now, by attempting to dissect the whole social context of what led to those difficult times without invoking the whole sorry farce of blame the 'aspie' husband.

Another ten minutes, another 9 years

Here is a companion piece to "ten minute roughcut" I made all of two years ago now.

This is also set around an NAS AGM. At the time of "Ten Minute Roughcut" I recall the board was just being introduced to the various top candidates for Chief Exec, of whom Mark Lever was chosen.

Well it is altogether 9 years since I went to my first NAS AGM, and I did not know what to expect from the organisation. It has changed, but I am not altogether happy with everything as will become apparant from the clip.

In reply to Socrates, later this week I am going to the launch of a new NAS branch in Coventry, a branch formed by autistic people, that was unconscionable 9 years ago. I have always refered to the NAS as a dinosaur for a very good reason, it takes a long time for anything to get from the head to the tail, and some branches are very much the dragging tail of the dinosaur when it comes to dealing with Autistic Adults. However I would like to think this new branch might end up shaking the beast from the tail end too.

Linking Socrates' concerns back to everyday life and experience, some branches of a big chain like the co-op give worse service than others, however the one cannot be responsible for the other, the structure is loose, and in one way what happens in branches is the responsibility of the branch not the body as a whole, although of course it is shamefull if the activity of one branch causes people to reflect badly on the whole.

We do have a great deal more parity in the organisation, gone are the days when the constitution effectively limited our numbers on the council because we were unequal members, however what people did not realise at the time, the restrictions against non parent members were created to keep professional influence at bay.

Well I feel the NAS is about to take a step backward in that respect, so far as allowing a potential professional advantage, which has already had the unexpected and probably unintended step of ending my tenure on the board.

Here are my usual hotel room ramblings and my question to the Chairman, posed the following day.

Judge for yourselves from the answer.

Danger and Fear

I have a confession to make, I like to read travelogues about danger and hardship, especially from the comfort of my armchair. I was recently googling up the Yungas Road in Bolivia, reputedly the most deadly in the world and I can believe it. I am not at all sure I would want to risk driving it.

However it set me to thinking about perceptions of risk. Everyday we walk along pavements, sometimes by the side of very busy road where stepping out would be certain death, the pavement may not be very wide, but do we think about it? I would hazard a guess if instead of the road to ones side there were a vertical drop of several thousand feet we would be stricken by vertigo and find the route much more difficult.

For what it is worth I have driven roads as difficult as the Yungas Road, there are loads of them in Wales, even narrower in parts, the difference being that there is not the traffic, and not the same degree of sheer drop. Mind you a couple of hundred feet, or a couple of thousand, does it make that much difference once you are off the edge?

Perception of danger is clearly relative, the picture at the top is not the Yungas Road, it is the Bylch y Groes in Wales, the two below are the Rhos Y Gwaliau on the other side of the mountain.



Below is the Yungas road and I know which ones I am going to stick to :)




And for good measure, added last night, me driving one of the Welsh examples.

A tale of two rivers

I suppose I ought to comment on the current topic of debate, the disapearing trajectory of Asperger's (syndrome, disorder, call it what you will)

I expect I could make all manner of historical comparisons and cite a number of sources, all of which I will subsequently have to do when I am writing up my research anyway. But (if I am allowed to start a sentence that way) I shall fall back into the land of analogy and go back to a geographical fable.

Once upon a time there were two countrymen, explorers both. One went away across the mountains to live in a foreign country but the other stayed at home. However each of them discovered a stream, the one who lived in a foreign land found that the stream got stronger and even though it went through a number of rapids on the wayit became a mighty river which he gave a name to.

The other explorer's stream seemed to meander on through deep woods and almost petered out. The explorer who tried to follow this stream was almost forgotten until one day a third explorer, familiar with the big river named after the first thought that neglected stream had water in it of a very similar hue and consistency to that in the big river on the other side of the mountains. This new explorer thought that the second explorer had been neglected and so named this newly rediscovered stream after him.

As time went on and more and more explorers followed these two streams, as they became rivers, down towards the sea, the rivers seemed to merge as they overflowed into the flood plain at the far end of the mountain range which divided the two countries. They seemed to merge, and then seperate, and merge again sometimes leaving isolated ox bow lakes in the way that mature rivers are wont too. Indeed it became difficult to say whose river was contributing the most water flow. People argued as to which of the names given by the explorers the delta should be named after.

Then one day, one day, somebody decided that instead of settling the issue by following the streams down to the sea, where the river had become so wide it had lost all distinction as it merged with the tide, that they would try and follow each river to it's source.

At last they discovered why the waters were so similar. Because both streams had the same source at the watershed. One flowed an easy path down one side of the mountain into the country the first explorer had moved to whilst the other flowed down the other side through secluded woods until it emerged at the bottom of the mountains onto the plain shared by both countries alike.

It was the same water all along, and the explorers names? Kanner and Asperger.