Exaggerated claims about autism study

This will be the first of a series of articles on ‘fake science’. The current academic/scientific community works with the media to promote claims about ‘reducing symptoms’ in various specified conditions/diseases. Here the categories of psychiatry come into play. Using categories the overall fact – behaviour (in anyone) can be improved by behavioural interventions can be presented as “scientific findings” about “symptoms” of a given condition such as ‘ADHD’, ‘learning difficulties’ or, as here, autism. Where would they be without all these categories? The claims produced are very typically based on intensive studies which have been set up to force a result. A small statistical result is then misreported to represent a major finding. The misreporting often starts with the researchers who tip the reporting in a certain way. It is often not a case of the press simply misreporting the data.

This is an example of a report on a recent paper on autism. The report is in the Guardian though the Daily Telegraph also gives it the same treatment.

The study used a sample of 152 young people. There was a control group (no intervention) and the test group who received the intervention. The intervention was an intensive parental-training programme.

The Guardian reports: at the start of the study 50% of participants in the control group were assessed as ‘severely autistic’ and 55% in the test group as ‘severely autistic’. At a 6 year follow-up study 63% in the control group were assessed as ‘severely autistic’ and 46% in the test group.

Often these studies rely on parents for the ratings. This introduces a special situation of relativity. Are we measuring something objective in the young people or a change in their parents’ perceptions and feelings? Even when this is not the case often the raters aren’t blind. They know which group received the intervention and thus may be subconsciously influenced. In this case we haven’t had a chance yet to review the source paper so we don’t know whether either of these were the case in this study. Another problem that can occur is that the control group is not representative of what really happens and this can tilt the statistics towards the much desired dramatic result. Often the intervention is of a “pure” form which is unlikely to be replicated in the real world. Another problem is that the focus of measurement is on “symptoms”, which means behaviour. Do modifications in behaviour represent a real benefit to the person being treated? In this study for example, while “symptoms of autism” were improved, according to the Guardian report, there was no improvement in anxiety or “depression” in the young people. Perhaps they had merely been got to behave a bit better. Their “autism” (a physical defect?) was not effected at all.

At any event. Taking the results as they stand it would appear that some young people in the test group have been moved down at least one category in the level of their autism assessment. A small but significant percentage of the test group showed this improvement. In the control group (no intervention) this figure went up. So. The study shows (other potential problems aside) that this intensive intervention can have an impact at improving the worst behavioural excesses of autism in a small but significant number of young people.

That’s great.

But any possible real-world benefit from this (which is in reality no more than a confirmation of what is already known – intensive behavioural interventions can modify behaviour in autistic children – is lost in the exaggerated reporting. The title of the piece in the Guardian is already a piece of drama:

“Study offers potential breakthrough in care of children with autism”

And this, the first sentence, is phantasy:

A new form of therapy has for the first time been shown to improve the symptoms and behaviour of autistic children, offering a potential breakthrough in care for millions of families

Perhaps the author should be writing adverts for ‘new’ chocolate bars. She manages to get the words “new” and “first time” and “breakthrough” and “millions of families” into the one sentence. Of course none of this is strictly speaking not true. The idea of training parents in behavioural interventions for ‘behavioural disorders’ is not new. But you could argue that the programme put together for this study was a “new form of therapy” – by definition. And yes given that the study showed a small percentage benefit you can, if you imagine a large enough population, extrapolate from the study to claim that if applied in the real world “millions” would benefit. “Breakthrough” would be more contestable but then ‘breakthough’ is a vague word capable of wide interpretation. Nonetheless there is nothing really new here. The improvements were in a lab study. The problematics of translating this to the real world are not addressed (costs of running the programmes, resistance of parents to take part, and so on).

To be fair the authors of this study are reported as acknowledging limits of their study. E.g.

This is not a cure, in the sense that the children who demonstrated improvements will still show remaining symptoms to a variable extent, but it does suggest that working with parents to interact with their children in this way can lead to improvements in symptoms over the long term

Nonetheless there is a problem here. Precisely because of the marketing style hype the actual real findings, the real applicability, are lost. In some cases of ‘behavioural disorders’ training parents in behavioural interventions can be helpful. Perhaps this particular study puts a new spin on it but there is nothing here of the order of a “breakthough”. The hard work would be implementing this already existing knowledge. In the current context that might mean policies and programmes set at the highest level by the Department of Health and the NHS. It would mean a big budget allocation. There is a kind of a split here. On the one hand researchers produce these papers – after all they want to get published and attract funding – and the press reports them in sensational terms – after all they want to sell more papers – and on the other hand there is the real world of limited resources in the NHS. (As well as particular problems with parent resistance which can often be a problematic in getting take-up of parent training programmes).

A more concerned approach would focus on how the already existing knowledge could be meaningfully applied in the real world. Indeed (with Illich in mind) rather than look to an implementation of costly parent-training programmes by the NHS we could envisage the NHS playing a role disseminating information which was then taken up by local ‘champions’ and voluntary associations of parents who implemented the ideas – without the requirement for a ‘professional’ paid ‘expert’ to tell them what to do. I.e. the dream of a scientifically literate and empowered democratic population.

Exaggerated, and therefore misleading reporting aside, such studies do have value. But simply shouting about them (at the top of your voice) from the rooftops is not going to get anywhere. We need to overcome this institutional paralysis and cultivated dependence on hierarchy and realise that if good ideas are to be taken advantage of the people themselves are going to have to self-organise and do that.

In the snake pit

Your editor was consulted today about a possible job. (Yes; unfortunately running this web site is an act of love and he has to hawk his little skill-set around to find a buyer so he can put food on the table). The job was working on a web site that connects householders with a certain type of supplier.

It was mentioned in the preliminary telephone interview (possibly deliberately to test the water) that the owner of the web site wants to include a question which potential suppliers have to answer:

Do you speak English?

Well. It’s not exactly racist. Not quite. (Though it clearly discriminates against immigrants). But, really, what a mean-spirited question to ask. The type of work in question is pretty simple. Even if a supplier didn’t speak a word of English it would be possible for the householder to communicate what work they wanted done with a few simple gestures. And really that would be normal and human.

Why does the person behind the web site want this question to be asked? Most likely to head off complaints from householders that the supplier (arranged via the web site) “did not speak English”. He is thinking about his moneyHis concern for his money eliminates his humanity. And by extension that of everyone else who is involved with his project.

Why don’t these people just bite on it? Don’t put that question on the web site. Have a little bit of courage. Have a little humanity. But, always, for some reason these people (who probably aren’t actually racist and nasty), nonetheless choose the path which prioritizes money above love. What is it that makes them do that? What is this compulsion to do evil?

Anyway. Your editor will have to find another job. Of course in this rotten society it is a question of which evil to choose. Or, simply, starve to death.

A loveless society…

Strange, because to act with a little bit of love isn’t hard. It is even natural.

 

Poverty porn – why is there so much of it in the Guardian and is it justified?

This is a Guardian article about Ken Loach’s latest film – about the benefits system.

It is pure Guardian. A sort of bewailing about some sort of undefined injustice. Something is wrong. People deserve better. Someone, somewhere, is a bastard for allowing this to happen. Etc. But no critical analysis. Not a word questioning capitalism – which might conceivably have something to do with poverty. Just an indulgent wail ‘something is wrong’.

The review shares a characteristic with many of the articles on the Guardian about people in ‘poverty’. They are almost always (if not always) desperately short on facts. There is a benefits system in this country. People receive living allowances plus their rent paid. It may not be much but – look at the figures in this Guardian article. It is certainly more than enough to put 3 square meals on the table a day, albeit basic ones. If someone is going without meals to feed their kid how did that happen? This editor is quite willing to believe that that happens. From a journalistic point of view it would be very interesting to know how it happens. In detail; with facts and figures. That would be a good piece of journalism; a good story. But we never get that. These stories ostensibly take the side of the impoverished. But we never really get to grips with how people end up in these situations. As a result the stories provide material for ‘right-wing’ advocates of the personal responsibility theory of poverty. The people described in these stories must be feckless. Ironically, the Guardian provides endless fuel for the view it claims to be fighting against.

These over-dramatized, emotionally loaded stories invite us to feel both sympathy for the’victim’ and rage against the ‘powers that be’ at the same time. One subtext appears to be (a unifying theme) that more public money should be poured into the social security system. But the fact that the narrative is presented without the key facts suggests that it may just be a little bit phoney. Could it be that the real aim here is to manipulate the public and politicians into spending more public money on the benefits system? Who would benefit from that? One group of people who would obviously benefit from increased spending on social security is all those who work in the the benefits industry; all sorts of advisers and trainers in charities, and local authority officers of various kinds. A sector which perhaps forms a significant part of the Guardian’s readership?

The Guardian informs us, in a tone decrying how small it is, that weekly unemployment benefit for an adult in this county is £73.10. This works out at around £315.00 per month. In addition to this sum people with no other income or wealth are entitled to have all of their rent paid. (There are caps on the total amount payable but in most cases the sum available will pay for modest accommodation in full). For comparison the current average monthly salary, after tax, in Russia is approximately £370.00. [1] Out of which people will have to pay for their accommodation. True; the cost of living in Russia is cheaper. For everyday essentials the cost of living is quite a lot cheaper. But the differential is not so great for any items other than food and accommodation. (As a guide; a smart shirt may cost 2/3 of what it does in England. A digital camera only slightly less). The sum paid to an unemployed person in the UK which the Guardian is complaining about is only slightly less (a difference which vanishes when rent is taken into account) than a worker may earn in Russia. And Russia is by no means the poorest country on Earth.

This comparison exposes the narrative about ‘poverty’ in the UK. Could it be that the people making all this fuss about ‘poverty’ somehow have an interest in it continuing? Do they even help their clients’ to assume the posture of victim? Is the problem really the (not so) pitiful amounts paid in benefits or is it something else? People really are suffering. Yes. But is the answer really to pump more money into the state welfare system? If we had those missing facts from the poverty stories we might begin to be able to understand what the problem really is. But, frustratingly, the facts are missing.

We’re told (also by the Guardian and the liberal left to which it belongs) that we can improve ‘standards in education’ by pumping more public money into state schools. And we can improve ‘health’ by pumping more money into the NHS. But the last Labour government pumped billions into education [2] and after that the UK remained near to the bottom of educational standards amongst developed nations. [3] The same government also massively increased public spending on the NHS [2]. But is the population any more healthy?

The people who stand to benefit from ‘servicing’ the poor, unschooled and ill are always likely to talk up the need for their services. Typically these demands will be presented in moral terms. Nonetheless their words should be treated with skepticism.

Notes

1. https://en.wikipedia.org/wiki/List_of_European_countries_by_average_wage

2. http://www.ifs.org.uk/bns/bn92.pdf

3. https://www.theguardian.com/education/2013/oct/08/england-young-people-league-table-basic-skills-oecd

Another death, another cover-up.

In 2009 we reported on a report by an ex Social Services inspector Graham Badman into Home Education. The report was designed to make recommendations concerning the Home Education sector.

The Badman report made a series of recommendations to introduce a high-level of surveillance into the home education sector. In particular the report made a recommendation that all home educating parents be recorded on a register and that there by annual inspections and examinations of the parents and young person by the local authority. The report made much of the tragic death of a young girl in Birmingham who was being home educated. However; as we pointed out in our critique of the Badman report, there was ample evidence in that case that social services had failed to intervene effectively, not because they lacked certain powers, but because they failed to effectively use the powers that they already possessed. Specifically; social services departments have a power under Section 47 of the 1989 Children Act to launch an investigation if they have concerns about a young person. In the tragic case of  Khyra Ishaq in Birmingham social services had been advised of serious welfare concerns by the girl’s head-teacher (who made 3 separate phone calls to social services) but they failed to launch an investigation. The Badman report came out just before the 2010 election which saw New Labour lose power. The incoming government did not implement the recommendations.

A new and similar case has now emerged in Wales. In this case a young boy who was being home educated died. The parents were initially arrested for neglect but the charges were later dropped. (This happened 3 years ago. The ‘child practice’ [1] report has just come out). The ‘independent’ (as described by the Guardian) report into this case  by Gladys Rhodes White, who is, in fact, an employee of (or consultant for) the South Wales Regional Safeguarding Board which is a local government agency in Wales, recommends, that:

The child practice review, published on Friday, recommends a change in the law so that the details of all home-educated children are kept on a register and that they are seen and spoken to and their wishes recorded on an annual basis. [summary of report from the Guardian]

These are the Badman recommendations all over again.

Once again; social services are covering up their failure to act effectively using the already ample legislation by recommending they be given new (and more intrusive powers). In this case too it turns out that:

By the time of Dylan’s death, he and his sibling were known to the authorities but professionals believed they had no right to insist on seeing the youngsters [Guardian]

A belief which is not correct. This is Section 47 of the 1989 Children Act:

Local authority’s duty to investigate.

(1)Where a local authority—

(a)are informed that a child who lives, or is found, in their area—

(i)is the subject of an emergency protection order; or

(ii)is in police protection;

(b)have reasonable cause to suspect that a child who lives, or is found, in their area is suffering, or is likely to suffer, significant harm,

the authority shall make, or cause to be made, such enquiries as they consider necessary to enable them to decide whether they should take any action to safeguard or promote the child’s welfare. [2]

The full text of this existing law is well worth reading. This is a powerful law. For example if during the course of a Section 47 investigation the authorities are refused access to a young person they have the power to take the young person immediately into care. Provision is also made to make referrals to the Education Department when there are concerns about education.

In the case of Dylan Seabridge the authorities had concerns. In the Guardian report these concerns are reported as being to do with the mother’s mental health and the father’s physical state. These are surely quite serious concerns? Two officials from the local authority went to the home and were denied access. The matter was then filed. These are precisely the kind of conditions envisaged in Section 47 of the 1989 Children Act. What are local authority childrens’ services departments being paid for if not to be aware of the 1989 Children Act and act on it?

The pattern is, tragically, so often the same in these cases. Rather than admit the failings of local authority staff under the current legislation, reports exploit the tragedy to call for yet more powers for social services. But – any reasonable person can see that if local authorities cannot use their existing powers effectively they are unlikely to do any better if they have yet more powers. The most likely reason for making these calls is to cover-up the failures to act. They are trying to create a story-line that they failed because they didn’t have sufficient powers and thus bury the fact that they failed because they failed to use their existing powers.

What also appears to be happening is that social services are silently admitting their incompetence. They seem to be saying ‘make it a statutory duty to gain access to the home once a year and we will do that; but don’t rely on us to use our initiative’. However; this shows that they haven’t even begun to grasp the matter assigned to them. In cases where parents are deliberately abusing their home educated children a planned visit once a year is something that can be planned for and prepared for. (The young person can be schooled to say the right things. Evidence of abuse can be hidden). It would precisely be the unexpected visit that arises because concerns have been raised that would identify abuse. Social services seem to be in the grip of a fatal paralysis. There are no signs in these reports (which endlessly repeat a professed concern for ‘Safeguarding’) that they have even begun to grasp the problem.

Notes

1.  These ‘child practice’ reports carried out by local authority Safeguarding Boards are standard practice when a young person dies and there are concerns.

2. http://www.legislation.gov.uk/ukpga/1989/41/section/47