Are the messages about autism compromised?

Workplace research has been around since the 1930s with studies like those of Elton Mayo.

There are ways of discretely observing office behaviours, or behaviour in a factory, or in a retail business. There are many studies that look at relationships between people in the workplace.

So it should be possible to study the circumstances of people on the spectrum in the workplace.

We only have, for the most part, stories from people on the spectrum about their work experiences, but faced with the statistic that only 15% find long term employment we aren't learning enough. It should be a priority, particularly as part of Disability Confident, to enhance understanding of what makes it difficult for people on the spectrum to stay in work.

You would have thought that the £26 billion it allegedly cost in 2006 to support adults on the spectrum, that there would be a sizeable incentive to invest in research to make it easier for people on the spectrum to find long term employment.

Rather than depending on DWP staff who appear to have poor disability awareness training who are undermining the measures already in place.

Gosh spot the typos I made when I did that - I usually scan more carefully, but they still get through. My big fingers tend to hit two keys at once.

Most researchers are presented with difficulties, such as assessing minors, or observing groups without the observer having an effect, or the way in which people can compromise the information they give. It doesn't stop research in other fields getting evidence and more answers.

A lot of social sciences data gathering involves gauging behaviours which may not be explicit, there's no excuse for not being able to set up controls and procedures. And yes it is difficult to compare individuals with different life patterns.

Most disciplines find ways round this. They don't ignore key research areas just because they are difficult.

With autistic spectrum at the abler end, we really are dreadfully short on evidence. There is a growing number of adults on the spectrum, both from late diagnosis and those diagnosed as children growing up.

The failure to research this area is a shocking neglect, for which there is no excuse, other perhaps than not being able to get the funds. But funds can be directed to an area of need with recognition in the right forums. Is that happening?

What I've tried to show in this thread and the gaps in research. I wish someone who can influence these matters would act on it or contact those who need to be asked.

ARC has a website catering for the big UK research centres like Cambridge which lists published academic papers.

However these are mostly very specialised studies on the causes of autism or studies of groups of children. Papers on adults are few and far between, and tend to be limited to very specific investigations that don't seem to help enlighten our understanding of the needs of adults.

There has been a paper this year on "The cost-effectiveness of supported employment for adults with autism in the UK" (Mavranezouli et al)

When you look at it it is about supported workplaces for people with mental health problems or intellectual disability compared to just having them hang around in day centres. This is important research if it comes up with advantages for getting more people on the spectrum into supported work rather than not being sufficiently engaged.

However there's a bigger problem here, and the article does refer to the cost of supporting adults with autism - £26 Billion in 2006 alone.

It is easy to understand from this that the Government is eager to get people on the spectrum into work. But it is clear from Disability Confident that the Government are thinking about able people on the spectrum able to take on work and be self sufficient.

UK academics are  fumbling about with whether work is a better way of keeping people severely affected by autism occupied. This is important work, but it doesn't answer the Disabilty Confident side of the equation.

Why not? Wat's stoppinbg UK researchers studying the wider adult autistic spectrum population?  Is it intellectual snobbery? Or the direction the money goes in?

We realy really really need answers now.

In the UK Autistica, based in London, purports to be the UK's leading autism medical research centre. But they only seem to have started looking at adults comparatively recently, one of their aims being to support adults with autism.

They held a conference in September on ageing with autism, which seems to have been a first. The opening speaker said - it was significant that compared to research on children, relatively little research has been conducted on adults with autism, and almost nothing on autism and the elderly.

What puzzles me here is that NAS was a significant presence and gave several papers. But I've looked for this conference on the NAS website and cannot find it.

I do think we need to be pressing NAS and the Government as to why there has been so little research on adults with autism. The Autism Strategy and Push for Action are a bit vaccuous without some underpinning knowledge.

Daisy Girl makes the crucial point: research does not follow people with autism beyond their 20s.

SFARI (Simons Foundation Autism Research Institution) in New York carried a story on their website in March this year - the bulk of research is focussed on children and studies of adults with autism are rare. This was from an article in World Psychiatry.

One of the geographical regions taking most prominence on adult autism is Scandinavia.

Britain (my observation not SFARI) seems to be lagging way behind on adult autism, probably reflecting a reluctance to spend money on it. Hence the pretences that you can grow out of it and that numbers diagnosed are going down - very cynical. But try and find any meaningful research on adults in UK academic publications.

Another SFARI story in 2011 said that "contrary to popular assumption, people diagnosed with so called mild forms of autism dont fare any better than those with severe forms of the disorder" This was from a paper in the Journal of Autism and Behavioural Disorders by Anne Myhre and others.

Something else about the quality of research on autism. Every year this discussion forum is inundated with students wanting information for their projects, who haven't gone through the proper channels on the website.

The danger with ad hoc research is you do not know enough about the respondents you get in this way to ensure they are representative. Also there are serious ethical issues about the disposal of data after research, and even if carefully anonymous, some information imparted could implicate an individual or an organisation. So you just don't do it.

Now there are always students, usually the lazy ones, who will try to do it this way, hoping not to be found out. And some of the projects I've seen have been arts or media students.

But most of the students making these approaches have been from psychiatry, psychology, psychiatric nursing and related subjects. And some of them have been from top institutions. The fact we get so many of these suggests that the standards, as regards undergraduate projects are not being enforced.

And if these disciplines are being lazy about undergraduate ethics does that implicate the quality of more advanced research?

The outcomes of research on autism have far reaching impact on the current autistic community. I don't think that academics in this field fully appreciate the implications or their responsibilities.

Agreed...I think its a myth. OK there have been cases where autism has cropped up in high profile situations as an afterthought, but have been challenged.

The Government's obsession with scroungers and benefits cheats where in most cases the amounts lost bear little comparison to the tax evasion of large companies, I cannot imagine anyone getting far with made-up symptoms.

The Government seems to be very good at beating up the meek and helpless but useless at dealing with the fat cats, and yes there are a few examples of benefit cheats getting away with large sums, but not by claiming autism. They're the ones working while claiming benefit, not people trying to live off benefit.

Conversely if someone is successfully diagnosed are ulterior motives, if there were any, in any way a detraction?

I'm sure benefits scroungers do exist.  But why target families of autistic children, I would imagine the % is small.  To go through the assessment process is highly stressful and considering that professionals seem to err largely on the side of caution diagnostically, it's not easy to get a diagnosis in any but the most obvious cases.  You cannot fake autism.  So what family would go through all that, purely to get benefits?  Knowledge of entitlements is lacking in quite a few people anyway.  I had to have it pointed out to me by Parent Partnership, and judging by the frequent enquiries on here and other forums, especially where people feel guilty applying, it's very unfair for professionals to tar everyone with the same brush for a minority of spongers.

IntenseWorld said:

"There is also the issue that allowances (eg DLA) become accessible with a diagnosis. The team receive a lot of requests for statements – some parents may put pressure for a diagnosis because they see it as a ‘passport’ to services. This is a change from the past when a diagnosis was seen often seem as more devastating in terms of consequences for a young person."

Not Autism specifically; but I do believe there are parents like this. They see their child as a "cash cow". By getting them a diagnosis and claiming they have all these difficulties, it means they get more money. And it's not as if Autism is something (unlike blindness or deafness) that can / can't be proven by a medical test.

I have come across such a person. The impression I got from her was that she was trying to get her child diagnosed with ADHD in order to get more benefits.

The problem of research following people is that the research cohort, in respect of autism, is rather remote from the professions they serve. This is because they are publishing in professional journals paid for by societies whose members are mostly practitioners - GPs, psychologists, psychiatrists etc.

The actual research cohorts are few and small - key ones include Cambridge and Sheffield. And they are involved directly with people on the spectrum, which makes the results seem all the more peculiar.

Because most of the practitioners out in the real world may only occasionally treat people with autism, and even then it is more likely they are treating someone for depression or psychiatric complications who just happens to be on the spectrum.

Of the autism research cohort you'd expect them to have a very good knowledge of autism because they are usually centres which also diagnose and support people on the spectrum. So why aren't they more switched on?

Well for one thing where does the money come from that pays for research? In psychiatry and psychology there are panels of experts who determine the basis for diagnosis and care and treatment and cure of conditions. I suspect the research is funded to support the status quo - in other words - there's little or no money around to go off and be innovative or find out something new. I suspect in psychology and psychiatry you have to stick to fairly narrow rules, or else go and research something less critical like the paranormal or people's responses to music.

The other problem is the quality of research. It puzzles me that the populations (numbers of individuals on the spectrum) studied in these research papers is incredibly small, occasionally less than 10 and seldom more than 30. In most academic disciplines such study populations would be deemed way too small to be accurate. Moreover there seem to be few controls on the variables in these populations - we don't know whether they are sufficiently comparable. We are talking in terms of what would be for most scientists totally unacceptable study populations.

I suspect these are the patients passing through the clinic attached to the research cohort at any one time, who might be on their books for a span of several years, who consent to being studied as part of their treatment. So they could have all kinds of comorbid and secondary conditions. Moreover the actual research may be equally questionable - poorly structured questionnaires, poorly regulated observations, incomparable measurements etc. I doubt if the research would be acceptable to most scientic disciplines.

So what's going on here? The public at large probably assume that universities and internationally recognised institutions set the standards across all disciplines. And universities aiming for top research rating have the same standards across all subject areas.

The reality is that the standards are set by respective peer groups across those subjects in other universities, not centrally. So the quality of research between disciplines varies enormously. To some extent this is inevitable as the evidence may not be comparable. Many arts researchers are dealing in video recordings, portfolios of work produced etc., which have to be assessed on quality and originality.

In most sciences, in order to compete at the top research ratings, individual researchers have to produce numbers of very high standard research papers and it is very hard to get a readership or a professorship. In other subject areas readerships and professorships are handed out for ludicous reasons - some subject areas having appallingly low standards. The problem is, assessed across univesities, a subject like say archaeology, can achieve top rating for work that wouldn't qualify for an A Level, and readers and professors have hardly any internationally recognised papers by normal standards.

It leads to a lot of cross disciplinary resentment. Some academics have to work incredibly hard to get a professorship, other disciplines really seem to give them away, leading to accusations of awarding "plastic professorships". Professor is most definately not a comparable term.

So the upshot is that, in autism, the research is measured by comparison with other cohorts doing the same thing. Study populations and lack of controls, largely through observing individuals currently or recently attending clinics can be perfectly acceptable, whereas other scientists are staring in disbelief at how noddy the research is.

The trouble is you cannot - indeed must not - criticise other disciplines, and you can lose credibility if you get caught working cross discipline and criticising.

Consequently research on autism could be appallingly poor. But nobody is in a position to do anything about it.

So yes they should be looking at many adults on the spectrum in a range of day to day environments under scientific procedures.

But no they're not....not even remotely....

Just to add to this "growing out of autism" idea. I think that there is a brief period in the life of a person with autism (and no learning disabilities) where they appear to have got a lot better, for me this was as a late teenager and on into under and post grad University. You are both in a structured environment, and there are no pressures except doing the work required. However, every day is still an act. It is not natural behaviour as it is for NTs.

Later the cracks start to appear, either the problems of not finding work and the benefits system, finding work and having to try and maintian the mask every working day etc etc. Loneliness, isolation (all the things adults with autism write about on these forums).

Unfortunately research does not follow people with autism beyond their 20s. I really think the pressure of keeping up the Aspergian Mask to live an NT is too much in the end, and all the co-morbid conditions appear, and there is no treatment that works for reactive mental health issues.

So, what I am trying to say is that I think it is possible that there is an appearence of "growing out of autism" but it is just learning a set of very mentally draining skills which create a false person, and sooner or later the cracks appear and the autistic behaviours "come back" (of course they never went away they were just masked), and they are combined with all the problems of long years of mental effort to keep the NT mask going.

In my opinion it is this effortful "faking it as an NT" that NTs just can't get. Being in their world is so easy for them they don't understand that pretending to be an NT for someone with autism is just impossible. So the researchers mistake the observed NT behaviours for some fundamental change in behaviour which has become assimilated and easy.

I am really surprised and humbled, as a lot of the time, by longman's analysis of things, as he's taken my thoughts exactly (in this case of FE and HE) but put it into an articulative approach. And he thought nobody looked forward to his responses  

It is just a lot of the time I do not have an articulative answer back.

Intense, I am shocked but not totally surprised that your LA may be doing this, as I too have been thinking that maybe autism isn't as "rare" as it once thought it was. The numbers have been coming down from 1 in 100, to 1 in 80 etc.

Wether this is due to more diagnoses (wethere correct or not) or just more cases coming in more concerntrated areas, is up for debate.

It is curious that provision is somewhat better coordinated or paied a little bit more attention to at children's level, through parents partnerships etc but not so much at adult level. I am not trying to make whooping generalisation but it does seems this way, at least on paper, no doubt by due in some regards by the autism is in children only mantra. Erm...don't these kids grow up!

Longman's analysis seems true for the most part in my limited knowledge of the science field, as I want to go into it too but not medical/psychology. I personally find it revolting that your peers review your work, when they may not be experts in the field or may hold their own prejudices about you, the work or anything else for that matter and this is before we get to the publishing houses of these journals, which bottles down to making money and getting the best reputation for themselves and increasing revenues.

Anyway that was my views.

urspecial

It's not only FE that is diabolical with money.  Apparently schools don't always spend their SEN funding on SEN provision either.  And apparently there is nothing the LA can do to force them to from what I have read.

This is what I have read elsewhere written by a former school governor:

"Other than the amounts agreed in a statement not one penny is ring fenced for SEN it is at the whim of the headteacher and the only accountability is from untrained Governors. There is a guideline agreed this year (for the first time) by the school forum. However the LA would not actually enforce or monitor this because it is a voluntary guide.

The LA, Ofsted and DofE should get involved if Governors are not fulfilling their statutory duties in this area and/or there are exclusions but in practice they would look the other way if the school does well with non SEN students. GAP data is highlighted more for Free School Meals.

Schools are encouraged to carry forward some money each year and if the carry forward is not increasing then technically the whole budget has been spent. This means that for the year it is a £700,000 under spend (still a lot in hard times) Whether it is on SEN is highly complicated with, in my experience, Governors, Headteachers and the LA not actually knowing what should be included in this spend.

In short the whole system relies on Headteachers and Governors being passionate enough to fund SEN. If they only care about results many would use money on other students where they may perceive more bang for their bucks."

I even read in the same place, that "in one case a HT did not realise that he/she was supposed to devolve the SEN budget, with the result that there wasn't one until this was eventually realised and set straight by the council. Terrifying."

Another person revealed that the local Parent Partnership stated:

"A parent raised a concern about the amount of underspend (or carry forward) schools currently have (£7 million as of March 2013) which I believe is c5% of the DSG."

Someone also asked:

"Oughtn't there be clarity, such as a list of schools who have under spent/not spent their SEN budgets in 2012 - 2013 and could managers give an account for any under spend?

Are Head teachers free to spend their budgets how they wish? if so how and to whom are schools accountable?  Does the LA have powers to check how school budgets are being spent?"

It is all about lack of accountability and nothing being policed.  Just like, as you say Longman, the Autism Strategy.

Further Education and Higher Education have both rather drifted off course on disability issues.

When the Disability Discrimination Act came in the Universities, being very league table driven, got into a terrible panic about the consequences of not complying, and being sued, upon their place in the hierachy. But the available information at the time, apart from wheelchair ramps and fire refuges, was directed towards the social model of disability.

The social model preaches that people are not disabled but may need help to be able to compete "on a level playing field" (overkilled metaphor). So rather than address individual needs most universities concentrated on colored paper hand-outs, correct font sizes and all that stuff. And when no-one got sued, once the infrastructure like ramps had been put in place, provision has gone rapidly downhill since.

The difference with Further Education is they have to sell their courses, so disability provision gets in the way of marketing. League tables didn't produce a kick start. FE colleges have performed very badly over disability, and again finding no-one gets sued helps the argument that its all a fuss about nothing. Consequently provision for disability is shocking right across the FE sector, and not much has materialised to support people with autism. 

The reality is there's not much we can do about it. Like the Autism Act it is noddy legislation - it has no real empowerment, just a lot of unenforceable good intention by people who never stopped to think how their inadequately researched thinking could be out into practice.

As they say, the law is an ass. All very complex and clever and needs people who charge a lot to enforce it, but an ass all the same. And money will always win over justice.

If you "grow out of Autism", you don't have it in the first place. As children, you see how NTs act in certain situations and I guess many try to fit in / copy what the NTs are doing. Some also develop coping mechanisms to learn to deal with stressfull situations.

When I asked about a diagnosis last year, I was seen by a junior doctor who didn't quite know what to do with me. (He only knew what to do with children who were believed to be on the spectrum) He also mentioned something about how I may not even get funding for a diagnosis.

It's disgusting.  No matter what the NAS pushes for, this underhand, snide and suspicious attitude is always going to mean many families with autistic children do not get support because there is an ulterior motive.  And yes, it's about money.

I've heard this argument again and again in adult further education. Yet, another college were able to provide the support that the other college couldn't. I'm not sure if that was because the colleges were in different counties. But the impression I got was "we can't be bothered". I was also informed by someone who works with disabled adults in higher education, that there is funding. But it seems that the college just couldn't be bothered.

Something I read on another forum:

Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. Lawton shares on page 33 what Dr. Leslie Carter observed:

“She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”

And I like quoting this as well, because of the parallels with trying to function normally with AS/HFA:

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

As for our experiences being listened to, until such time as there is a cultural change by the powers that be, to ask us what we feel and what we need/want, we will continue to get dictated to as to what's good for us according to them, research will never research all the right things and statistics will be based on what they want them to be based on, not on full evidence and reality.

When I read things like that which I quoted above, having been said as part of a scrutiny panel investigating services for autistic children, it almost sends a chill through me.  That professionals could actively maintain such a "them and us" attitude and look at parents of autistic children like some sort of aliens who are asking for strange things or are actively attempting deception and coercion, is frankly ridiculous.  How can there ever be any hope?

Well, you know what they say about people automatically imagining others' ulterior motives and actions because they are projecting their own?  I have never lied to a service about either mine or my children's conditions or the severity of them.  And yet, I have been blatantly lied to by top clinicians all sticking together in denial of the facts to cover asses.

The trouble is our experiences don't get reported back to the medical world, or anyone else that influences outcomes.

Medical Journals are mostly published by professional bodies - that's what funds them. Members, whether they read all the content, or no more than skim read it, which is worse, apparently want the best in internationally refereed research to be published by them.

Our concerns just wouldn't make the grade even as a footnote in such journals.

If professionals don't willingly read the stuff produced, they probably have to go to professional discussions where they work, that review current developments.

More worryingly too, journaslists read and review these articles, and pick up on the hot stories, which will be things like dietary choices or claimed cures etc that will appeal to newspaper and magazine readers. For example the person found naked recently at a care home for people with autism.

The trouble is most of these papers are written by research teams in very tiny research areas. Universities have to produce a lot of internationally refereed published papers to stay high in the league tables. The actual subject matter may only be read by the members of one or two competing research teams internationally. To read most academic papers you need to be a regular reader of that line of research, otherwise you wont know the context or the jargon.

The people who published a research paper on children growing out of autism, there may not be any other teams researching that. To challenge the claims another research team has to set up another data set, either existing data used a different way, or fresh measurements, which may take years. Even if another research team has researched this area and can contradict, they have to write a paper to the required standards, get it past international referees who may force several rewrites, and it may be months or years before a counterclaim gets into the same journal. 

Know I don't suppose the publishers or the readers or the contributors to the Journal of Child Psychology and Psychiatry care a jot about the impact of that paper on people with autism and how they get treated.

That paper has set back years of effort by organisations like NAS to fight such myths. And the claims made in that paper will be used to reinforce old established myths about autism. 

The professional bodies who print this junk - and it is often junk (as for all the refereeing the quality of research and its reliability is often lost in procedure), are quite devoid of ethical responsibility. They couldn't care less.

And as for the paper in the British Medical Journal, same applies. Whatever anyone says, there's an authoratative paper that says autism is now on the downturn. It backs the drive to reduce diagnoses and cut back on services to people with autism on economic grounds.

And does the British Medical Journal care? I doubt if morals and ethics come into it. Its about publishing papers that look good that's all.

You're welcome.  I'm all for people on the spectrum trying to do what works for them, but I speak from experience as an adult with ASC, what spending my life trying to fit in has done for me and from what I've read about other autistic peoples' experiences.

What I believe Longman, is that something is going on in the background with assessments.  A deliberate attempt to reduce diagnoses.

A local scrutiny panel on autism services for children had the following nuggets in it's minutes (these quotes are by the LA Head of SENs):

"ASC statements are eligible for ‘top-up’ funding as they have always been categorised as ‘low incidence’ and the LA provides additional funding in addition to funding delegated to schools for low incidence categories of need. However as ASC is now the highest incidence category of need for statements, this needs to be re-thought."

"There is also the issue that allowances (eg DLA) become accessible with a diagnosis. The team receive a lot of requests for statements – some parents may put pressure for a diagnosis because they see it as a ‘passport’ to services. This is a change from the past when a diagnosis was seen often seem as more devastating in terms of consequences for a young person."

"The question is always whether the higher prevalence of ASC diagnosis is about higher prevalence of ASC or a change in classification to include a wider spectrum of need or both."

So not only are they accusing parents of trying to force clinicians to (mis)diagnose autism to sponge off the benefits system, but they are wanting to take away funding for autism because it's now too prevalent (therefore autistic children don't deserve support) and are then criticising the diagnostic process by saying we are overdiagnosing, so in other words this explains the attitude I have heard from parents saying that CAMHS are often saying "not enough traits for a diagnosis" and "well s/he doesn't have any problems at school so s/he doesn't need a diagnosis".

It's disgusting.  No matter what the NAS pushes for, this underhand, snide and suspicious attitude is always going to mean many families with autistic children do not get support because there is an ulterior motive.  And yes, it's about money.

Regarding the "growing out of autism" you might like to read this which pulls apart those results in sufficient detail to show it for the fraud it is:

http://www.forbes.com/sites/emilywillingham/2013/01/17/can-people-really-grow-out-of-autism/ I don't always agree with all of the author's articles but this one is enlightening.

Obviously you cannot grow out of autism.  Years of trying to fit in to society and "play a part" to be like others has a tremendous toll on mental health.  Look up "Aspie burnout".  You can never lose your autism, adapting and coping doesn't mean you can.  You put that same person who has learned to adapt and "pass" into an adverse environment and watch them regress before your eyes.

So yes, in answer to your question.  The above article shows how it's so easy to be selective for the purposes of massaging statistics.