Bob Wright - Autism Speaks in London
On Wednesday 22nd October TreeHouse hosted their inaugural autism lecture with guest speakers:
- Bob Wright, the founder of Autism Speaks;
- Anya Ustaszewski who is autistic, a member of the London Autistic Rights Movement and is on the executive committee of ASSERT Brighton and Hove, an organisation which provides support and information to people on the autistic spectrum and their relatives, partners and carers;
- Virginia Bovell OBE who has a teenage son with autism. She is a trustee of the National Autistic Society and co-founder of TreeHouse.
I had to decline my invitation to attend because of the impossibility of taking two days off work to travel to London for an evening meeting. I would like to have heard how the Autism Speaks message translated to a UK audience. Fortunately Thursday’s Times carried an opinion piece by Bob Wright. One member of the audience at the lecture tells me that this is an accurate reflection of the views Bob Wright expressed at the meeting.
Fighting against autism or working with autism?
Bob Wright begins by describing his grandson’s regressive autism.
How does a child vanish in plain sight? Our grandson, Christian, used to watch trucks drive by and name them all - “fire truck”, “mail truck” - until, suddenly, he had no more words. We used to go for walks on the beach until he could no longer tolerate the feeling of sand on his feet. Warm smiles were gone, too, replaced by eyes that would not connect with mine.
This harks back to folk tales about changelings. It may well describe the initial feelings of bewilderment when a child regresses. But to hold to such a view years after the event is not helpful. Christian is different but he is still Christian. The psychological effect of holding to the changeling myth is that all efforts are devoted to reversing the change and recovering the “old” child.
Meanwhile the “new” child is busy adapting to the change. From his point of view he has not regressed. Instead the world has become a different, perhaps a more scary place and he is doing his best to cope. The world has changed and he has changed accordingly. His way of coping is what we see as his autistic behaviour. From his point of view we must seem like the crazy ones. Against all the evidence we insist the world is just the same as it ever was and try to normalize his behaviour.
Autism acceptance means trying to look at the world from the child’s point of view, understanding their behaviour as a rational response to the situation they are in and trying to make the situation more acceptable to them. Remove the pressure. Remove the stress. Let them know that they are OK and that we can be trusted. Then we can go forward together. This is the complete opposite of the strategy of battling through the autism to recover your child.
It may be that in some cases battling autism does produce results. Autism acceptance also has its success stories. I do not know which approach is most successful. But most reports measure success in terms of observable childhood outcomes: indistinguishable from peers, mainstreamed without support etc. It is hard to tell if the subjects of these success stories feel an improvement in their level of contentedness or self esteem. Researchers rarely ask the children what they think and I am not aware of any studies that follow children into adulthood and attempt to evaluate what they feel in relation to the way they were raised and educated.
Sub-prime opinions?
I was surprised to read Bob Wright’s recollection that
Christian’s doctors told us “goodbye and good luck”
after he was diagnosed. As chair and CEO of NBC he should have had access to the finest specialists money could buy. Is that the best advice they could offer? Or did it go more like this?
Bob Wright: My grandson has autism and I want you to cure him. Money no object.
Autism Expert: There is no cure but with appropriate interventions we can help him develop to the best of his abilities.
BW: No cure! I am not paying for defeatist talk like that! I want a second opinion. You’re fired!
AE: I am sorry you feel that way. Goodbye and good luck.
If you have a strongly held opinion you are more likely to remember those events in the past that bolster your opinion and downgrade or reinterpret events that undermine your position. We are all human. We all do it. Or maybe Bob Wright really did invest in some sub-prime medical opinions on autism.
Lonely or Lonesome?
Because it’s a spectrum disorder, a person with autism can have anything from mild symptoms, such as a literal approach to language, making it impossible to follow the subtleties of conversation, to being unable to speak, living in a state of lonely despair and agitation. Some people with autism can lead independent lives, others may never be able to care for themselves.
So being unable to speak is evidence of living in a state of lonely despair and agitation. While people with language are only mildly affected and merely struggle to follow the subtleties of conversation. He is confusing external manifestations with inner life. I know people with “mild symptoms” who are deeply aware of and unhappy with their social isolation. I also know non-verbal people who seem happy enough but who am I to tell? We should not presume to apply standard criteria for happiness to non-standard people.
We should also be wary of confusing life skills with cognitive and linguistic prowess. The most commonly used tests of cognitive ability (Weschler) are heavily dependent on verbal ability. Michelle Dawson has reported on the different picture we get if we use tests that are less dependent on the subjects verbal ability (Raven Matrices). Still other tests are used for social adaptation (Vineland scales) because of the frequent disparity between measurable performance in differing areas of competence.
Epidemiology is not a synonym for epidemic
The need is particularly urgent in the UK - the incidence of autism is greater here than in the US (where it is 1 in 150), and is rapidly increasing.
Never mind that he means prevalence, not incidence, does he really think that the rise in reported prevalence from 1 in 166 at the start of the century to our current estimate of 1 in a 100 represents a real increase in numbers? Most commentators see it as a vindication of the NAS estimate in the 1990s of a figure of just over 1 in a 100 and evidence that epidemiology is at last beginning to capture a true picture of prevalence. There are areas of the USA such as New Jersey which also report prevalence figures comparable to the UK and the explanation does not need to invoke an epidemic.
Dr. Zahorodny said the higher rate of autism spectrum disorders identified in New Jersey is likely due in part to the more comprehensive and detailed nature of the health and education records maintained by public and private health and education agencies, which served as the basis of their survey method. In addition, the public and professional awareness of autism in New Jersey is very high, making for earlier identification of affected children.
Bob Wright, earlier in his piece, acknowledges that autism is a spectrum disorder. Somebody should tell him that most of the increase is in autistic people who fall within the normal range for intelligence and ability. They go to mainstream schools and the lucky ones go on to hold mainstream jobs and maybe find a life partner and raise a family.
For many of us it is not so much that autism is
one of the most devastating childhood disorders of our time.
Rather, as Bob Wright himself acknowledges
Families can be ground down by the need to give constant attention to their child and struggle with a welfare or education system that is often unresponsive to their needs.
The cost of autism
Bob Wright refers to the most recent study on the economic costs of autism by Knapp, Romeo and Beecham which revisits ground covered by a previous study [Järbrink K & Knapp M (2001) The economic impact of autism in Britain, Autism, 5(1) 7-22.] The forward to this paper posed some very interesting questions.
The Shirley Foundation is pleased to sponsor this study of the economic impact of autistic spectrum disorders in Britain. This follows the seminal study the foundation also initiated and sponsored in 1999 which – as one would expect from Professor Martin Knapp and his team – has now been developed with considerably more sophistication in methodology. The conclusion as to lifetime costs is, despite inflation, little changed from the earlier study. However, the increase in measured incidence and the number of life years of autism (which exceed those lived with Alzheimer’s disease) generate a national cost of £28 billion a year - a figure reinforced by economic research in Australia.
May this quite astonishing finding mobilise researchers, families, politicians, autism charities and our public servants to become activists in demanding answers to The Big Question of what causes the disability associated with autism. [my emphasis] That way lies hope, lies funding, lies effective interventions and lies choice for people with autistic spectrum disorder and their families. Ultimately, further research and development can help us reduce the economic burden associated with this disability and, even more importantly, help improve the lives of individuals and families.
The Big Question is the missing heart of Bob Wright’s position. For him it is already answered. Autism does not have associated disabilities. It is the disability. It is autism that has an overwhelming emotional burden, that devastates families, that is one of the most devastating childhood disorders of our time.
He sees autism as a burden on families and on the economy and as a burden on people who suffer from autism spectrum disorder. While he makes passing reference to the idea that autistic people suffer because autism is still met with a mixture of ignorance, prejudice or indifference, he only really considers their needs in relation to the impact this has on their families and on society.
This is apparent when he writes that
A study last year by the Foundation for People with Learning Disabilities calculated the lifetime cost to society of caring for someone with autism can be as much as £4.7 million per person. That includes everything from direct medical expenses and the provision of special education, to the hidden costs of childcare, adult care in later life, respite and family care, as well as the lost wages for carers who have to give up their careers.
Actually, lost wages for carers is quite a modest item included in family costs. Martin Knapp and his colleagues calculated total family costs including loss of earnings in relation to caring for autistic adults as £1.3 billion per annum. For comparison, the annual cost to autistic adults of lost employment is £9.2 billion. Bob Wright discusses the economic impact of autistic people. He neglects entirely the economic impact on autistic people. I have had cause to question the assumptions behind Knapp’s calculations in a previous post. Loss of earnings is not so much a burden on society as a burden on unemployed autistic adults, a burden of poverty.
Cost effective interventions
Bob Wright is unequivocal.
Starting with diagnosis, every child with autism should have access to applied behavioural analysis (ABA), at present the only therapy regimen widely considered to be effective.
Obviously, Bob was not at the recent NAS International Conference where Sir Michael Rutter opined that there was
No convincing evidence [of] benefits of psychological interventions contingent on either very early or very intensive application.
In fact Autism Speaks did not have any presence at the conference apart from a single delegate and a few leaflets. This surprised me as the conference theme of Research into Practice sounds just right for them.
One final point on the cost of autism. If society is spending billions on autistic children and the result is that we finish up spending tens of billions on autistic adults, is that a marker for how terrible autism is and a sign that we need to spend even more? Or could it be that we are wasting money on bureaucracy and ineffective interventions? If we listened to autistic people and their parents could we spend the same amount and be a lot more cost effective. I am surprised that a seasoned businessman like Bob Wright did not explore this more thoroughly.
The Yanks are coming
Bob Wright came to Britain as the guest of TreeHouse, an autism educational charity that does some good work around the country and supports the TreeHouse School in London.
Bob described them as THE national charity for autism education. Perhaps he was being polite to his hosts. Perhaps he is unfamiliar with the National Autistic Society, the oldest autism charity in the world, the administrator of six schools for autistic children and the instigator of the Make Schools Make Sense Campaign.
I am not decrying the work of TreeHouse. But Bob Wright’s article in the Times suggested that TreeHouse were the only show in town and now Autism Speaks was here to give them the support that they were sorely lacking and surely deserved. Then he referred approvingly to the Autism Bill without acknowledging its promoters. You guessed it - the NAS. He wants us to emulate the cross party approach that Autism Speaks promotes in the USA. Well the All Party Parliamentary Group on Autism is currently in its 9th year and is another initiative of the NAS.
While it is true that Autism Speaks has been spectacularly successful in the USA, it is a bit much for Bob Wright to come over here and, with complete disregard for our past achievements and continuing efforts like the Think Differently campaign, expect us all to follow his lead. Part of the success of AS involves typical corporate expansion - absorbing the opposition like Cure Autism Now and NAAR in order to acquire their professional expertise and their funding base. Autism Speaks does have a UK presence. It is being funded until 2012 by the Shirley Foundation.
Steve Shirley has been quietly funding major projects on autism for many years now. She wrote the foreword to study on the costs of autism that I quoted above. I first heard of her when her foundation sponsored the first ever online international autism conference Autism99 in conjunction with the NAS.
(NB the current autism99 website contains a strange mix of sensible articles and an autism library promoting biomedical cures and anti vaccine rhetoric. It has no connection with Steve Shirley or the NAS)
Autism Speaks UK’s stated Aim …
… to raise funds to accelerate biomedical research to determine and understand the causes and biological basis of autism spectrum disorders; and through that understanding to discover and promote new ways of improving the quality of life for all those affected.
is not as stridently pro-cure as Autism Speaks mission statement in the USA
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder.
For comparison here is the NAS Mission Statement
“We champion the rights and interests of all people with autism and aim to provide individuals with autism and their families with help, support and services that they can readily access, trust and rely upon and which make a positive difference to their lives.”
For Autism Speaks and Bob Wright autism is primarily a problem to be eradicated. But until we find effective means of prevention and cure he advocates doing our best to normalize autistics via ABA.
I can already hear my critics suggesting that, given the general level of ignorance about autism, it is churlish to criticize someone like Bob Wright, who is at least raising money, raising the profile of autism and and making some good points. I admit that some of his statements about the need for more understanding and more financial support are welcome. But there is so much else about his message that is wrong. He promotes the wrong sort of understanding; the wrong sort of projects for financial support. He equivocates on the questions of biomedical quackery and vaccines. (His daughter has bought into the whole biomedical approach for Christian) He may well say that
Autism speaks. It’s time for the world to listen.
But there are many in the autism world who would like Bob Wright to speak less and listen a bit more.
Pingback by Permalink | Travel | October 26th, 2008
[...] spectrum and their relatives, partners and carers; Virginia Bovell OBE who has a teenage son with Source Blogged about [...]
Comment by codeman38 | October 26th, 2008
::applauds::
I saw that editorial earlier this week and was rather annoyed by it, but I’ve been so overwhelmed I couldn’t really break down what all was bothering me. And you’ve pretty much hit on all of it.
Comment by Kristina | October 26th, 2008
Your last line bears repeating a couple of times over.
Comment by Phil Schwarz | October 27th, 2008
I will consider Autism Speaks to be listening when its governance structure includes self-advocates in influential positions. Autism Speaks has a great deal to learn from the NAS on that score (and many others).
Comment by Tanners Dad | October 27th, 2008
Open Letter to Autism Speaks… Time to unite…Tighten the belt…Time for the real fight….Are you for our children or against them?
Dear Autism Speaks,
The parents are fighting for our children. Autism speaks is fighting a good fight of awareness. As we become the squeaky wheel and the focus of everyones attention we must find common ground and unite to complete our mission. I feel we must unite. A divided front accross so many different organizations is only hurting our children. It is time for us to find a middle ground. It is time for us to demand the research that was requested more than a decade a go. It is time to see results. There are researchers who have been working with grant money for more than 20 years on Autism research and have produced nothing. Yet they are now getting grants in the 10, 20 and 30 million dollar range. It is time to ask for performance. It is time to ask the question… What happens in 10 years when all these children become adults?
It is time to tighten the belt. If the AIG incidents have taught us anything it should be this. Tighten the belts. Never again should planes show up on annual reports. Never again should black ties be required. Every penny spent on luncheons, kick offs, give aways, gift baskets, and even rent. The Parents are going bankrupt. Do you see that? It is time to tighten the belt.
The Autism society is quickly coming a society of have and have nots. Some parents have the chance at ABA therapy. Some parents do not. Some parents have therapies paid for by inurance. Some do not. Some parents are advocates for a safer vaccine schedule and safer vaccines. Autism Speaks seems to advocate for the government (All vaccines on time no exception). Some groups have black tie affairs. Some groups sit at home and clean up feces.
Even Bob Wright said in October …
…The last vaccine Christian had before he regressed was MMR - that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects.
It is time to choose sides. It is time to choose our children. The Government has more than enough resource to defend their never ending policy of mandating more and more vaccines. Do you speak for Autism or do you speak for the pharmaceutical companies?
Are you for our children or against them?
http://www.causecast.org/member/tanners-dad
Comment by Michelle Dawson | October 27th, 2008
That is a spectacularly accurate statement from Sir Michael Rutter. Anyone can verify what he said by resorting to reading primary sources. If I knew how to send flowers, Sir Michael would currently be up to his chin in them.
Comment by Dinah | October 27th, 2008
The TreeHouse event at City Hall at which Bob Wright was speaking had been the occasion for making the Something About Us movie by many autistic contributors(Autreach project with ASAN) - which you can download at http://idisk.mac.com/jesabenstock-Public?view=web open Something About Us folder with left hand triangle, download file of same name with right hand arrow - it should open; it lasts 20 minutes).
The evening was further re-balanced by Anya Ustaszewski one of the AutreachIT trustees and a member of LARM (London Autistic Rights Movement), and many autistic invitees in the audience. LARM handed out leaflets at the door, and we had placards both of which you can find at http://autreach.backpackit.com/pub/1614533 (they are all-purpose and anyone is free to reprint and use any time!).
To me the best thing about the evening was seeing Bob Wright being obliged to flap
- everyone having been asked to be considerate to the couple of dozen autistic members of the audience and flap instead of clapping. The whole thing will be online - I will intend to post the link here when that happens. Various cameras were pointed, so with any luck there is video of both the Wrights flapping. Anya U gave a magnificent response and explained autistic fear of a eugenics agenda and how access to augmentative communication can liberate capacities; Virginia Bovell tried - with a bit of success - to find some common ground (support needs to be funded) ; Carmel Shane, who is also London Autistic Rights Movement spoke from the floor about being an autistic who has had cancer - no comparison!! it was exactly the right first question from the floor.
As we expected, there was too much going on in the reception for people to take much of the video in - *and* there were fewer monitors than originally promised (one was broken). That said, TreeHouse have publicly promised to send everyone there on the night a copy. Nice things were said about it, but little close attention paid. That was ok: Mr Usually Wrong began his talk by saying that what he and his wife would really like would be if all autistic people were able to make such beautiful films. Roderick Cobley pointedly spoke from the floor about how if he meant that, then he should recognise that having access to the means to make a film could be a key (i paraphrase throughout).
It turns out that the reason TreeHouse didn’t want to give the dvd away on the night was probably that Autism Speaks TM had assumed they would come in with their literature, a stall, display stands etc and leave stuff on every seat - and the only way TreeHouse could prevent this was by a general moratorium on publicity material of any kind.
We all thought the TreeHouse people on the evening were courteous and considerate to a nicely judged degree.
For myself, I think it’s just possible that the wrong-headed grandparents may have been effectively exposed to alternative viewpoints for the first time. Usually they live like Royalty and don’t have to meet any plebs.
Comment by Michael Fitzpatrick | October 27th, 2008
Mike, Excellent responses to Wright - what a pity you were not on the platform! It was also left to speakers on the floor to take up his crass parallel between cancer and autism. Wright also substantially endorsed a floor speaker who claimed vaccine-autism links (and a conspiracy to hide these). It was alarming to hear the leading voice of Autism Speaks echoing the themes of the Jenny McCarthy anti-vaccine campaign in the US. I was able to make the points - as the parent of a child with autism and as a doctor in Hackney where we have had 300 cases of measles in the past 12 months - that though there was not a shred of scientific evidence for these links they had caused guilt and distress to parents of children with autism - and risked damaging child health more broadly (by threatening the child immunisation programme). It was heartening to discover that these points were generally well received by the audience.
Comment by abfh | October 27th, 2008
Loss of earnings is not so much a burden on society as a burden on unemployed autistic adults, a burden of poverty.
Perfectly stated. Thank you.
Comment by David Andrews M. Ed. (Distinction) | October 27th, 2008
“So being unable to speak is evidence of living in a state of lonely despair and agitation.”
Exactly.
And - to be honest - what the hell is the good of being able to speak if, when you’re actually in that state (as I pretty much am now), nobody actually listens anyway?
Bob Wright needs a serious kick in the bollocks: he’s made life for autistic adults much worse with his idiotic pronouncements.
Comment by David Andrews M. Ed. (Distinction) | October 27th, 2008
The ‘exactly’ referring to the inaccurateness inferred by Mike in using the quoted statement, by the way.
I hasten to point out that, just because someone doesn’t say anything. it does not mean there’s something inherently wrong going on. What I’m meaning here is that it is when an autistic person does speak and no bugger listens to that person that something inherently wrong is happening.
Comment by Mike | October 27th, 2008
Tanner’s Dad
If you want unity we have to find common ground on which we can all agree. Raising the anti-vaccine banner and asking us all to rally around it is not going to get you very far. The vaccine question has been settled by scientific research. You either accept the scientific consensus or you reject it. There is no middle ground there.
I think everyone from Neurodiversity through to DAN could agree to campaign for equal access to speech and language therapy, occupational therapy, respite, etc. The National Autistic Society in the UK is not perfect. But it does unite parents who want to cure their kids, (and parents for whom a cure is a not an issue) and autistics who do not want to be cured. We deliberately do not campaign over causes and cures for autism. We campaign for services for autistic people and their families and for respect for the rights of autistic people to fair treatment and understanding from society.
Phil
Unlike Autism Speaks we actively encourage autistic people to join us and take part in our structures of governance. At present our National Council contains 7 out of 42 members who are diagnosed autistic, 1 sibling, 1 with no family connection to autism and the rest are parents. The majority of our board of trustees are parents but we have 1 autistic board member. 8 years ago there were no autistic council members or trustees.
Dinah and Michael
thank you for taking the time to report on events at the meeting. I wish I could have been there.
Comment by laurentius-rex | October 27th, 2008
Michelle if you want to make Michael Rutter a hero, go ahead, but do remember he was in the thick of characterising us as psycotic back in the bad old days, and he is not a man who seems to care much about science when he “opines” given his failure to recognise the most elementary biases in the studies he claims to support the self perpetuating notion of the ratio of male to female autistics.
Comment by Mike | October 28th, 2008
David
you seem to be having a rough time right now. People here are listening. Or we can take it to email.
Comment by David Andrews M. Ed. (Distinction) | October 28th, 2008
Thanks. It’s the people here that I need to have listening. And they’re not. I’m not even sure I can rely on my social worker now to advocate properly on my behalf with her superiors anymore. I’m being expected to do more now with less money, and it has thrown doubt on whether I can continue my studies at Jyväskylä UAS - studies that are important in three ways:
a) the network of social contacts I’m making;
b) the network of professional contacts I’m making;
c) the additional understanding I’m developing in my work in educational ethnopsychology.
And these are important for getting work here, especially - surprise, surprise - the first two.
At this point in time, I am very vittuuntunut. Yes. It’s a very bad swear word and I’m using the Finnish translation, otherwise it’d not get through here.
Finland is not as modern as it likes to think it is.
Comment by Mike | October 28th, 2008
Dave
I am sorry to hear that the Finnish authorities are being unhelpful. If the situation is not resolved could you relocate to continue your studies?
Comment by Mike | October 28th, 2008
Larry,
it is a little unfair to berate Rutter for his past use of now obsolete terms in relation to autism. Remember that the National Autistic Society began life as the Society for Psychotic Children. Regarding the male predominance in autism, I know that Attwood thinks the numbers are artificially skewed because a different behavioural profile in girls along with differing societal expectations makes them less likely to be diagnosed. Has anybody studied this properly and produced some hard data?
Comment by David Andrews M. Ed. (Distinction) | October 28th, 2008
“If the situation is not resolved could you relocate to continue your studies?”
Not without being very far from my daughter.
Comment by Michelle Dawson | October 28th, 2008
Thanks Mike for responding to Mr Rex. I can add that science isn’t politics. It’s not about taking up sides (or about authority figures). It’s about trying to generate accurate information. Accurate, verifiable (via primary sources) statements about intervention research in autism are rare, and in my view, this accuracy should be encouraged.
Comment by David Andrews M. Ed. (Distinction) | October 28th, 2008
Tell you the shitty thing, Mike…
I have an M. Ed. in Special Education (Educational Psychology), and I specialised in the Autism (Adults) programme, and I was trained to: assess and diagnose difficulties; plan, implement, monitor and evaluate support strategies; and a load of other things too. These people are trying to have me believe that I don’t know how to do these things, and that what is essentially a crisis management approach is actually support! No, it isn’t! It’s crisis management, and the reason is that they’re setting me up for a fucking crisis, and then doing the bloody cavalry thing, and then blaming me for getting into a crisis that they set up to fucking happen!
Unbelievable!
Am I supposed to believe that people who have Master’s degrees in social policy and administration do not know about support measures that aim to prevent crises by supporting a client adequately in the first frigging place?
I’m dealing with imbeciles.
My ‘employment advisor’ is a total tosser. This is what happened:
In May, I went to the Jobcentre, and there was a party of people from there and my social worker present, as well as the interpreter and me.
I presented information about the programme of studies in Multi-Cultural Education at Jyväskylä University of Applied Sciences, and told how these studies would increase my employability (because of the nature of the course and because it’s from a Finnish institution). It was agreed that this course would be financed as Labour Force Training. This course has a credit value of 30 ECTS points, being equal in effort to the first one-third of a Master’s degree in a UK university. The workload (in 60-minute hours) is 20 per week; because I am dyslexic, this is increased to about 30×60mins/week.
My employment advisor then said that the main obstacle to my gaining employment here was that I don’t speak Finnish. She put a middle-level Finnish language course (taught at Southern Kymenlaakso Vocational College in Karhula) on the table, knowing that - should I refuse it - I could make myself ineligible for basic daily allowance; I therefore had no choice but to accept. This course is full-time (20ov over 5 months, which is equal in workload to the J-UAS studies and much more intensive). Again, in 60-minute hours, this would be 20hrs/wk; being dyslexic, I would have had to devote another 10hrs/week to my efforts to get through the course; again, this would make my total effort for that course 30×60mins/week.
(I do actually speak Finnish, but am not very confident in official settings, and this is evidenced by the fact that I have a level 4 pass in the old version of the National Language Certificate; the fact is that the Jobcentre refused to offer me a Finnish course, and - when I found one for myself - refused to allow me through for it).
My employment advisor is aware that I have a diagnosis of Asperger syndrome, dyslexia and dyspraxia (it is a matter of record, since this was why the meeting in May was held in the ‘Väylä’ section of the Jobcentre. She was aware of the nature of both courses, in terms of their respective workloads. And I was prepared to try to do both courses, since refusing to do so would lose me my basic allowance. However, even for someone who has no developmental or learning difficulties, it is clear that attempting to take this amount of study - in two extremely different subjects and at two very different levels - is not a realistic plan. For someone with diagnosed learning and developmental difficulties, this plan should never have been made; and - being my employment advisor responsible for making this plan - it was her responsibility to consider these issues.
My social worker, having discussed the matter of travel and accommodation costs (but not any possible other study-related costs), rang me a few days after this meeting to tell me that her superior had decided that - if I was going to be getting support for the J-UAS seminar trips (travel and accommodation costs only) - then I would not be getting another essential support that my social worker herself had put in place. In other words, out of my meagre 392e/mth, I would have to lose about 100e/mth and pay - out of my own pocket - for study-related materials such as printing paper, writing paper, pens and printing ink.
The Jobcentre - for their part - would authorise the payment of 32e/mth, but only during months for which a seminar would be held. What has in fact happened is that she authorised payment of only 16e/mth.
So I am already over-burdened with the 30hrs/week studying for my J-UAS studies, and I miss the day of the language course: I am exhausted from ths currect study materials, and all the other issues currently going on (dealing with the Ombudsman for Social Affairs, continuing my job search duties, and having no effective support person available to work on the matters that she helps with - for about two months - whilst she herself was off sick, suffering from a stress-related illness). On top of this, I am fast becoming aware that I cannot afford to lose that 100e/mth from my disposable income… it is simply not possible to live and pay what needs to be paid: food, bills, other daily-living incidentals (e. g., spending time with my daughter in a place where she wants to go and buying us a meal there), as well as study-related expenses (as listed before). So I am having to figure out ways in which to earn a living: for a foreigner with a disability label living in Finland, this is - according my vast experience on the topic - practically impossible.
The Jobcentre has not assessed my abilities to do a job of work; nor have they offered any actual guidance on career choice or even how to apply for a job in this country. The Social Welfare Office has not assessed my daily living needs, and are very clearly not taking into account these needs as stated in a large number of meetings involving them. And now my employment advisor is threatening to stop my money because I didn’t go on this Finnish course, even though I gave a very good reason why not.
The result is that I have no money to actually have a social life with: on less than 84e/week, it is impossible to do the things that I - as a father, and as a part-time student - have to do. It’s even more impossible to do those things on 58e/week - as the SWO is still expecting me to do!
On top of this, monies have gone missing from my account - which the bank tells me an organisation has take as a direct debit, without a mandate from me. This is directly related to the SWO withdrawal of that essential support. The money that was taken from my account was the last money I had left to last until the next lot comes.
Given that they removed an essential support, the SWO have set me up for things to go very wrong. The Jobcentre thing is - in comparison - an irritating detail. SWO have set me up for a crisis. To have done so is actually against the Finnish Act on the Prohibition of Discrimination.
Bunch of total fucking incompetents! ‘I’m fed up’ is not even close to how I feel just now.
Comment by Sharon | October 28th, 2008
AN excellent and important post Mike. Thanks you for tackling the typical negative and inaccurate of Mr Wrong.
Thanks also for including the quote from Sir Michael Rutter. It’s nice to have someone emphasise accuracy.
Comment by RAJ | October 28th, 2008
Mike and Michelle;
Regarding ABA therapy and the ‘right’ for all children to receive this therapy. A just published report in the Journal of Pediatrics did a meta analysis of all ABA studies and found that ABA is not associated with better outcomes than standard therapeutical inteventions . The cost of ABA therapy is prohibitive especilay given the global encomonic crises. Here’s the abtract:
http://www.ncbi.nlm.nih.gov/pubmed/18950798?
Comment by David Andrews M. Ed. (Distinction) | October 28th, 2008
“… ground down by the need to … struggle with a welfare or education system that is often unresponsive to their needs.”
This goes for autistic adults, too.
Being autistic needn’t be a problem, when appropriate support can make the difference between a life and a mere existence.
Comment by laurentius-rex | October 29th, 2008
The point is that Rutter believes his own unverified statistics and therefore is not interested in research.
When I see something better than mere diagnostic prevalence then I will reconsider which side I am on in this argument.
As yet there is none, because the bias of the research “industry” I dare not call it a science, is not interested, the money is not following in that direction, it is an area where social science is valuable in teaching military/industrial science a lesson.
Comment by laurentius-rex | October 29th, 2008
Michelle there is a form of meta-science which could if properly understood explain the economic, political and social behaviour of communities, and this meta science is quite evident in its “natural selection” of what is researched and what is not, it is governmened not by a pure spirit of enquiry at all, no matter how much the enlightenment has been able to define a set of rules for “science”
Astrology is as equally rule bound as science, so the method in itself is no guarantee of objectivity or truth.
Science, or discovery, or experiment, call it what you will has been governed by the industrial expansion of the Western economies, in itself a phenomenology capable of analysis by a variety of observationally based modelling and mathematical modelling, particularly in economics.
You may scoff at Comte and Durkheim and Marx even, but they were all instrumental in introducing the concept of statistics into science, something that did not arise of it’s own just by speculation and enquiry.
Comment by laurentius-rex | October 29th, 2008
And the other point that should never be forgotten is that it is a dangerous delusion to believe that somehow the contemporary praxis of science somehow epistemogically trumps other methods of enquiry and is a purer intellectual endeavour, well pure maths would no doubt trump the lot, but in its ultimate pursuit that would be a locked logical system that is only useful in its practical applications.
The scientific method in itself is actually a syncretic growth borrowing from maths and philosophy and a heck of a lot else, not to mention that many of the DWEM’s of science were literary figures as well.
Many of today’s scientists are less syncretic, and not even knowlegeable of other fields within the classical scientific enquiry, hence such nonsence as toxicologists claiming to have the answers to autism.
Autism study is by far not a pure science, it is not so much medicine (which in itself is less of a pure science than biochemistry or physics) even as a psyciatric, pyscological mishmash of a genre, just because we now have access to flashy machines, does not make it that more scientific.
Comment by laurentius-rex | October 29th, 2008
And we can go back to Descartes by way of Berkeley and knock on the head once and for all the notion, that if we see something, that we can record it as an objective happening, because we cannot, philosophy has come to that regard but the science of perception and consciousness if anything confirms that confabulation is part of the way the brain works in it’s interface with this wider world.
1 and 1 equals too within current rules, but why does it? how can that ever be proven and does it matter? Our observation is flawed, and autism science is as wooly as sociology as often as not, especially when it too rigidly believes what it thinks it sees, rather than wondering if it could be possible that they are mistaken.
This is not a licence of course for the pursual of highly unlikely and untestable theries, but cause enough not to so rigidly adhere to what has been handed down in the tradition, such holy formulae as the proportion of low IQ autistics in the total autistic population and the male to female ratio.
If we did not question that we would still be believing Galton’s head size data which implies the female brain and hence intellectual capacity to be lesser than the male.
And how much are Rutter and Baron-Cohen in debt to Galton, and Burt all considered to be paragons of the scientific method in there heyday
Comment by David Andrews M. Ed. (Distinction) | October 29th, 2008
“1 and 1 equals too within current rules, but why does it? how can that ever be proven and does it matter?”
1+1=2 works, purely by definition (at least, as far as I’m aware) and, yes, it can be proven, essentially using those definitions involved. As to whether it matters… hell, yeh, it matters. If it doesn’t matter, we’re all fucked: we use these properties of numbers to ensure that we can count our money.
Comment by laurentius-rex | October 29th, 2008
And finally before I cease my rant, it may be fashionable to make claims of being a scientist rather than a politician, and Mike I worry that you worship the same false gods as Dawkins, because you will not defeat the Wrights over an appeal to science, as they operate well within the political arena, where media is all important.
Rights and Justice are not something that science either validates, seems to care about, or can further, they are somewhat unscientific concepts, but they can be fought for and argued over, and it is important that they are, and that we do need a category of people educated in politics and the media, as much as we do in science to influence where the decisions are made.
It was when talking of his “advocacy” where Wright was at his weakest, because his publicity machine, indeed his interest is nothing of the sort, it is the rampant promotion of a wounded selfhood implied by a supposedly defective grandson, which ought to be fixable by throwing money at the problem, not necessarily all of his either, but what he can persuade others to part with.
So it was no arrogant assertion of mine when I told him from the floor, but plain truth, that I had been an advocate for far longer than he had (and by implication an advocate of much else besides autism rights)
As for my own wounded selfhood, that has been wounded by the construction that Autism Speaks puts upon autism, not by any one copping a plea of Asperger’s to get out of jail, we are a broad enough Church to encompass sinners in our midst and those who fail to live up to our standards.
No I am for Justice, and equality, and equality I might remind is not always being treated the same as everybody else (that is procrustrianism), it is being treated according to our needs, and that is our right. Mr Wrights right is wrong which I suppose means mine is left
We do not live in a scientific eutopia, (which would most likely be a dystopia, which I suspect the republic of Plato would be) We live in a world where debates devolve upon much else, and we need not to put our heads up our scientific backsides and pretend that politics is not relevant to us.
Comment by laurentius-rex | October 29th, 2008
Sorry David it can only be proven by it’s own rules, it is possible to construct alternate mathematics and systems where the rules vary. Yes it is important when measuring the length of a swimming pool, but when it comes down to fundementals of what lies behind matter, maths is just a model, not the reality itself.
Comment by laurentius-rex | October 29th, 2008
I expect Mike will understand this,
Marx, considered himself very much to be a positivist, and believed (as of course did many other sociologists at the time) that there was a set of laws that could be scientifically deduced that could unerringly predict the course of human history. He was of course wrong as Popper (who pops up everywhere) evinced in his Poverty of Historicity.
However for some time there was a notion, going back to Hegelianism that the laws of nature themselves obeyed a dialectic, and that it was not just the body politic that obeyed these predictive laws but that all of science was grounded upon them, something which Engels came up with in his “Dialectics of Nature”
Thing is for all it was speculation, that did have a determinant effect on science as it was practiced in the Soviet Union under Stalin, where it was practically a thought crime to contradict the dictates of Dialectical Materialism. (as it proabably still is in the Socialist Workers Party today (Roderick are you still reading?)
That led to some very bad science, however to assume that somehow in the “free” west, that science is not influenced by somewhat more subtle but nonetheless conformist paradigms is to be as deluded as Lysenko was. It is to be coccooned within ones own safe space whatever University department one is in.
I know at personal cost, what happens when you contradict “authority” I am having to pay that cost for criticising a lecturers Eurocentricity, when ironically he was supposed to be teaching about bias in research.
Most researchers exist in Silo’s that is there entire world, they don’t look far beyond, because the world outside is far to frightening, it is better to stick to the orthodoxy and the certainty and the self re-inforcement of ones colleagues, knowing where the next research grant is coming from and keeping ones tenure.
It is a world that wants to lock me out it seems.
Comment by David Andrews M. Ed. (Distinction) | October 30th, 2008
“… maths is just a model, not the reality itself.”
If we’re talking about engineering or physics, sure. Otherwise, maths - as a discipline on its own - is the only science with proofs. If it cannot be proven that 1 is real number and that 2 is a real number, and that 1+1=2, then there are serious practical problems counting… in the real world; and we prove those points using the rules that exist in mathematics. Sure… mathematics can be used to model mechanical or electrical systems - and, yes, that is just a model; but with regard to counting… that is not a model… that is how we know about quantities of objects in the real world. And even Gödel couldn’t deconstruct mathematics. He had to live with the fact that is conjecture is exactly that: a conjecture.
Comment by laurentius-rex | October 30th, 2008
But the proofs are only valid within the system.
I could say more because mathematics derives ultimately from human cognition, which is I think precisely why Godel was able to use intuition but not prove how it worked, simply because the maths is coming from the structure of the brain in the same way that the geometric and fractal precision of migraine auras does.
The brain creates maths to explain relationships and thus invents a system that is improvable, cogito ergo sum.
Comment by David Andrews M. Ed. (Distinction) | October 30th, 2008
“Godel was able to use intuition but not prove how it worked”
Which is why intuition is no substitute for proof. And that’s why we have defined entities in mathematics - because those things that are defined allow the proof.
“But the proofs are only valid within the system.”
True, but that does not alter the fact that one apple plus one apple is still two apples. And that is down to the fact that 1+1=2, which is “proved within the system” - although the validity of that proof there extends well beyond the system in which it is proven.
Comment by laurentius-rex | October 30th, 2008
Yes but if one allows that there are more kinds of entitiesin the philosophical realm that you can add together when you are making a sum, that is to say that the components, sum and sub sums all constitute valid entities in themselves which can be represented numerically, then compound addition becomes multiplication at a somewhat horrendous rate
Yes it is not exactly Ockham either, but every time he shaved his beard just kept growing back…
I do think maths is valid enough in the macroscale, just as Euclidian geometry is good enough for most things but I also think, that if we could see things from a totally alien perspective and permit aliens to exist in a different physical realm with attributes quite unlike anything we can posit with our limited cognition, it would be entirely possible that derived from there difference in being and perception that they could construct an entirely different viewpoint of the “universe” than our own using laws which would be opaque and beyond our comprehension, but would hold up within there own system.
At some point I think physics is going to fail on the point of mathematics and cognition, and I have heard it said that Hawking recognises that already.
Larry
Comment by Mike | October 30th, 2008
David and Larry,
your exchange is highly stimulating. I am printing it off to peruse at my leisure. And when I return to my computer tomorrow evening I may have soething to add.
Comment by David Andrews M. Ed. (Distinction) | October 30th, 2008
i’ll get back to you on that one Larry.
as soon as i’ve got a complaint made against my idiot employment advisor, because of whom i’m getting no fucking benefit just now.
Comment by laurentius-rex | October 30th, 2008
Intuition is valuable indeed in maths, it is the way the great mathematicians work, and I think the explanation truly does lie in the the way that mathematics is an outgrowth of our cognition, it is essentially impossible to concieve of the thinks that lie outwith our capability to concieve, a bit like the old Wittgenstein argument on words.
One can still speculate that such things are possible however just as one can concieve of an even build an erratic system using the elements of mathematics, it’s axioms and propositions only bending them to an alternate logic, so that paradoxes and endless recurrences become the norm rather than the exception. Bit like Zeno really. If the system is capable of producing absurdity and contradiction, then surely it will.
I do recall John Nash describing why he succumbed to the paranoid delusions, he did, because they came into his mind the same way in which his mathematical proofs did, intuitively, therefore since he believed in the math, ergo the rest must be true also, a beautiful mind indeed but still prone to human error.
I met John Nash and was privileged enough to have him answer my question when I saw a fault with his notion of asymtotic ideal money. He actually conceded that I had a point, which was most satisfactory, as he did not concede much else in our later discussions on postmodernism.
As to my question, did it come to me equally intuitively or was it good old Larry bolshiness? (which is probably as ingrained in me as anything is)
Comment by laurentius-rex | October 30th, 2008
BTW sympathise with your current problems, having problems of my own sort within the School of Ed at the moment.
Professors who do not like to be criticised with awkward questions that reveal flaws in there argument, or interupt the smooth flow of there accustomed delivery, which really needs to be ammended. I mean if I am having to do an extra teaching course so that I am “capable” of teaching at higher ed level, it makes you wonder, how they get away with flying in the face of all that is good education, for NT’s let alone AC’s
Comment by David Andrews M. Ed. (Distinction) | October 30th, 2008
“BTW sympathise with your current problems, having problems of my own sort within the School of Ed at the moment.”
Thanks, Larry. I appreciate that.
“Professors who do not like to be criticised with awkward questions that reveal flaws in there argument, or interupt the smooth flow of there accustomed delivery, which really needs to be ammended.”
Same thing with employment advisors. Dig this:
Well done, my idiot employment advisor; the one who offered me a full-time Finnish course on top of accepting a part-time polytechnic course as work-force training! Because I couldn’t do the Finnish (for reasons stated above) I’m having to wait for money from October until TVT have assessed my reason for not being able to go on the Finnish course.
That bitch should never have offered the full-time Finnish course in the first place! The incompetent cow!
I fucking hate this.
I have to live in Jyväskylä for a week on less than 100e… and it’s eating out all the fucking way, there.
I’m surrounded by incompetence!
What I really want is for these people to get a fucking clue on:
a- how to do real client work that
b- centres on supporting clients
c- using person-centred support plans
d- that include stated goals
e- and a timeline for completion and achievement of these goals
f- with stated activities to be engaged in to attain those goals
g- and named individuals whose job it is to engage in those activities
h- and methods of knowing how a goal has been attained
i- and appropriate funding to enable the people named in the plan to succeed in achieving the goals in the plan.
So far, I haven’t see one of these things in ten fucking years whilst I’ve been in this country (unless I’ve actually written it)!
Best of it is that I could actually bloody teach them this stuff! And they certainly bloody need to be taught this!
Comment by Paulene Angela | October 30th, 2008
Dear Mike,
I’m an ex-pat living in Southern Spain. Sorry to hear that Bob Wright and Co. have been showing a lack of diplomacy to the UK Autistic organisations/associations especially the NAS. It is difficult to reach a happy balance between making people aware and down right smacking it in their faces day and night.
Well some people may well complain, however I have a rescue plan for the UK, send him over here to Spain, we could do with someone like him that ploughs in like a bull facing a red towel. Spain has many fine specialists but a very poor research and investigation budget, plus we could really do with some additional awareness.
Good wishes to you and your readers
Kind Regards,
Paulene Angela
Estepona (Malaga) Spain
Comment by laurentius-rex | October 31st, 2008
What is worse my Uni ceased subscribing to the journal philosophica mathematica in 1995 and you cannot find hard copies for love nor money these days, I have had to go all the way to Warwick Uni to read some interesting articles in the journal on the sole computer reserved for visitors in there library, grasping difficult mathematical concepts in a quick reading is as impossible as finding a universal proof of mathematics, but Godel continues to intrigue me, because it would appear that his reasons for advancing what have become his most famous therems outside of the field probably have more to do with his belief system than anything else, and the irony is that they don’t have the effect he wanted from them, that is to say they don’t prove the infinite capacity of the human mind to solve any mathematical problem, but rather the opposite, that it is human cognition that is limited, not the number of propositions and axioms that are possible within the system.
All this stuff written in the usual style of the aljabberer, that I can no more read fluently than I can read music, a system that is both mathematical and paradoxical to, when you come to the difficulties of temperament, which account for why eastern music sounds odd to western ears, but would not have have done to Byrd and Tallis.
Part of the limits of mathematics of course are the limits of language to express and teach the concepts, given that in his correspondence with various mathematicians, none of them could be sure they were talking about the same thing, because of the vagaries of translation when they did not speak the same tongue.
I suppose it is possible to be a mathematician without being a philosopher as well, but that would be a rather boring life I think. (whatever the act of thinking proves)
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