Category: Muratpaşa Autism Talks

What happens if we do pre-natal tests for Autism? Neurodiversity, autistic culture, advocacy and the spectrum.

May 1, 2014

It looks like pre-natal tests for autism may be on the horizon. These scare the hell out of me, for many reasons, but principally because the implications of potentially losing people on the autistic spectrum means a great loss to society.

Pre-natal tests could prove helpful for parents of the autistic community, where they are used to detect autistic traits early, and in turn could lead to better early intervention measures.

Early interventions for those on the autistic spectrum can ameliorate the disabling aspects of the disorder whilst developing on the positive aspects of being non-‘neurotypical’.

Terms like ‘high-functioning’, ‘neurotypical’ and others which focus on the disabilities of autism fail to take into account the ‘difference’ that Prof Baron-Cohen discusses in the comment below:

  Desyrel hamilelikte kullanılırmış ve çok önemli kullanım gidişatı bulunmakla beraber çok fazla aşırı kalışabilmelidir. I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a ‘cure for autism’ is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special – such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth – would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference. 

Source: http://www.theguardian.com/society/2007/aug/07/health.medicineandhealth

 I discuss Autism Rights and Autism Advocacy at some length (though not as much as I’d like to) in my Autism Talks series that I am still giving around the country for Skeptics in the Pub. More on that here: www.tannice.co.uk/public-speaking/

Professor Baron-Cohen makes some fascinating comments in the comment piece that inspired this post, firstly;

 “The whole ethos behind medicine is to do no harm and if the test is only 80% accurate, it means a proportion of people will be told they have the condition when they don’t, so you’ve raised anxieties unnecessarily. Equally if the test is missing people, then they’ll be going away thinking I’m fine when they could be getting support.”

Screening for any illness means that there is a risk of both over- and under-diagnosing potential issues. This is common throughout medicine in the cases of Cervical Cancer* as well as Prostate Cancer (PSA tests), Breast Cancer, Colorectal and other disease screening that takes place on what Dr Margaret McCartney (and other doctors) refer to as the ‘worried well’. Dr McCartney also has views on charity and pharmaceutical industry interests with respect to screening, as well as private health screening, which is another topic entirely, not for this post.

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Here I am in Edinburgh on 22nd August 2012

Blaming mummy for MMR

April 21, 2013

When did the heat move from Wakefeld and the media, to parents?

On Thursday I saw a tweet asking “what kind of C*** stops their child having the MMR anyway?” I have to say, this kind of switch in dialogue around where blame lies sets my teeth on edge. And there’s a good reason for that.

I don’t have children, yet. I hope to have a few some day but I have worked with them in my role as an ABA tutor (Applied Behaviour Analysis – used in this case for children diagnosed with Autism Spectrum Disorder), helping frazzled parents cope with the bureaucracy of the Local Education Authority, their child’s education establishment and the demands (which I recognise are many) of running a successful ABA programme. Not to mention the normal stressors parents face and the additional difficulties of having a child who needs extra care, education, help and attention.

Ask any parent of a neurotypical child and they’ll tell you sometimes they struggle to have enough time to go to the toilet in peace.

So when I see someone decrying parents’ fears over the MMR I get pretty angry. I can well understand, based on my affection for my tiny dog (I know, I know – it’s not the same – but it’s what I’ve got!) that parents spend their time worrying constantly about their kids. At the height of the scandal, in 2001, Cherie and Tony Blair were widely criticised for asserting MMR was safe whilst at the same time avoiding confirming their infant son Leo had been vaccinated. This also is nonsensical. My medical records, your medical records and Leo Blair’s medical records are no one else’s damn business. Cherie later confirmed, in her autobiography ‘Speaking for myself’, in 2008, that he was vaccinated, but many children have health reasons that preclude them from immunisation.

Given we’re now reaping what Wakefield first sowed in 1997 – 808+ infections of teenagers (as of reports on the 18th April 2013) and the death of 25 year old Gareth Williams in Swansea – it’s time to really think about health information and how it’s disseminated.

Much light is made of the Daily Mail’s list of what will kill or cure you of Cancer but unfortunately I’m going to give them a break and side with them. A bit. Last week, on my way to work, I heard about new research stating that women who drink one glass of wine when pregnant could, instead of damaging their baby, end up with a more intelligent child. The radio report ended with a confirmation that Department of Health advice to avoid all alcohol during pregnancy remains unchanged. Health advice, from the point of view of the layman, seems to just keep bloody changing (changing, note; not developing). It was the same when I was born in the mid-80s – advice on whether to lay your child on her front or back when sleeping had just changed. My mum sleeps on her front, I sleep on my side. “Scientists can’t make their bloody minds up!” comes the cry. You can hardly blame sleep-deprived parents of one year olds for being reticent.

So what’s an expectant mother – or a new parent of a 12 month old, a month away from getting the MMR, in 1998-2001 to think? Should I give my precious child the MMR injection and risk him developing Autism or should I take the risk he’ll develop measles? An illness most people have never seen the full effects of? Herd immunity has been so high, historically, most people had never met or remembered someone with a bad case of measles, mumps or rubella. “Anyway, it’s unlikely just this one kid is going to have that much of an effect on herd immunity.” Or so they think.

Anti-vaccination arguments are powerful and emotive . Powerful and emotive is, to me, just another way of saying ‘damn convincing’. The trouble with Scientists, despite their perceived air of authority, is that they just don’t talk the same language campaigners do. They don’t come out with things that seem plausible and obvious to the ill-educated on the subject of vaccinations – “a child can’t cope with three vaccines at once!”

I don’t blame parents for being frightened- especially those with little to no real knowledge of how vaccines work or are developed and tested. They simply don’t have time to do all the research and when your daily newspaper, talking to you in language written for you, tells you there’s a debate and a controversy to hear about vaccines I think you could be forgiven for making what seems a logical risk-benefit analysis to make. Risk measles – that few people suffer from (they thought) or risk a developmental disability that will affect my child’s, and my life forever. Seemingly no contest.

Health information does change and develop and there is, rightly or wrongly, suspicion around Big Pharma and a perceived authoritarian government. I think if skeptics really want to get their point across about vaccines they have to do the following (and it involves a lot of work!)

– go to meetings of anti-vaxxers (like my friend Simon Clare did) and find out what their actual arguments are. Some are misunderstandings, some are twisted facts. They are many and they are fickle.
– Actually learn how vaccines are made and developed. Find out about their history – it’s more complicated and involved than you may first imagine
– Learn to speak the language of emotion and rhetoric – stories are powerful but numbers are not.
– Rebut specific claims rather than boldly asserting vaccines are safe. Realise some vaccines have been improved and ingredients removed (not because of the danger – because of public perceptions surrounding safety)

– Find really good, hard hitting evidence that’s easy to demonstrate where specific claims are incorrect. This graph is an excellent example (from http://www.medicine.ox.ac.uk/bandolier/booth/vaccines/nommr.html, accessed 21/04/2013)

Graph showing, persuasively that ASD diagnoses continued to rise after MMR was withdrawn in Japan in 1992

Cumulative incidence to age 7 years

NO EFFECT OF MMR WITHDRAWAL ON THE INCIDENCE OF AUTISM: A TOTAL POPULATION STUDY

As I prepare to write a forthcoming Skeptics in the Pub talk on the history and development of vaccines I hope to write and learn more and do some activism around public awareness. Stay tuned.

Pod Delusion Live at QEDcon 2013

April 17, 2013

On Saturday I was privileged to not only appear on the Skeptics in the Pub Panel with Sid Rodrigues of London SitP and Michael Marshall of the Merseyside Skeptics society at QEDcon but I was also on a live recording of the Pod Delusion – I think my 4th appearance.

Here’s what I said:

I do a talk about Autism and quack therapies for it and within that talk I mention vaccinations as a purported cause for Autism. Of course, we know that’s not the case and, historically, in order to fit my talk into 45 minutes to an hour my slide on the MMR vaccine has been curt. It simply reads ‘MMR – I’m sick of MMR’. I then go into a short rant about how MMR should not and should never have been part of the dialogue when it comes to talking about the aetiology of Autism.

However, I may have to alter my talk since MMR is, again, a blisteringly hot topic.

MMR is a vaccine intended to prevent Measles, Mumps and Rubella. I could rehash the story of discredited former doctor Andrew Wakefield and his unethical studies on children in order to peddle his own single vaccinations, but if you’re unaware of this then can I recommend Darryl Cunningham’s comprehensive comic on the subject, available as a link on the show notes. This will give you the background you need if you don’t already know.

The media frenzy surrounding Wakefield’s study results has, without a doubt, clearly influenced the conversation around Autism and vaccines in general. Unfortunately, the British propaganda slogan ‘careless talk costs lives’ is true in cases where journalists take a story like this and run with it. For years and years and years. Even in January this year, we had a story in the Daily Mail with the headline ‘American parents awarded £600,000 in compensation after their son developed autism as a result of MMR vaccine’ – an article by David Gardner – an exceedingly misleading headline given the article itself acknowledges that the decision doesn’t apportion blame or lay fault for the child’s condition with the actual vaccine.

What many parents don’t realise is that measles is highly infectious and can lead to blindness and death. Most people, since the measles vaccination was introduced in the UK in 1968 (63 in the US) haven’t seen a child really suffer with the illness as herd immunity quickly strengthened.

Whooping cough is another deadly illness, with 5 children dying in 2012 – children too young to be vaccinated (under 13 months old) are suffering from the reduction in herd immunity. Between January and June 2012, there were 2,466 confirmed cases.

12 years (correction – should be 15!) since Wakefield’s study was first published, we’re now seeing the deadly and injurious results – an increase of measles cases can be clearly seen since then. In Swansea, at the time of writing on Thursday 11th April, 693 children have been infected.

As Sarah Ditum wrote in the Guardian on Monday April 8th, “with measles cases so low, it was easy to forget what the vaccines were protecting us from.. the illnesses sounded almost picturesque – vintage diseases from the 50s. It was as difficult to imagine as the taste of Spam.”

But now Wakefield is on the offensive. He claims, on Age of Autism dot com, which has, this morning, been republished on the Independent website, that the British Government is culpable for the Measles outbreak, since they have denied parents the single vaccines he was championing. The trouble with single vaccines is that there’s little evidence of a benefit for them. He claims they are not in use solely because the government is trying to cover up the dangers of the combined vaccine and this is motivated by money. However, single vaccines involve delaying protection for children, risking missing the doses and attrition and injecting them three times instead of just once. Adam Finn, quoted in the Independent today, said “his proposal for single vaccines … came straight out of his head…. single vaccines are used in poorer countries that cannot afford MMR. No country in the world has switched from MMR to single vaccines.” What’s most interesting in this statement, for me, is that Autism is in fact found in every culture and every country in the world and chrildren are diagnosed with autism whether they’ve been given a vaccination or not. MMR is given at 13 months old but autism can now be diagnosed as early as 6 months and most parents notice some kind of developmental delay before their child reaches 12 months of age. 

In February 2012 The Cochrane Library published a systematic review called ‘Vaccines for Measles, Mumps and Rubella in children, with the “To assess the effectiveness and adverse effects associated with the MMR vaccine in children up to 15 years of age.”

They searched the Cochrane Central Register of Controlled Trials and used five randomised controlled trials, a controlled clinical trial (CCT), 27 cohort studies, 17 case-control studies, five time-series trials, one case cross-over trial, two ecological studies, and six self controlled case series, concluding “exposure to the MMR vaccine was unlikely to be associated with autism”

Only last week the centre for disease control in the US released a new study that confirmed what we already have enough evidence to assert with good confidence levels – those with autistic spectrum disorders are no more likely to have had more jabs than the other – Frank Stefano, the lead author, stated his study of one thousand children simply found no relationship between vaccine antigens and ASD.

So why does this continue? Why must children suffer from ignorance? Conspiracy theories are attractive and grieving parents who haven’t yet come to terms with their child’s differences – differences they never anticipated – will grab on to anything to take away the blame. It’s cathartic to suggest an outside agent – the government – pharmaceutical companies – are to blame. To put this into context, these are the same people who told the National Autistic Society in May 2012 that 74% of people caring for someone with ASD get no support and only 28% say they receive good info where to go for support and help. The 72% who get no help and information are often the ones sucked in to alternative medicines that are often harmful and very expensive and end up with an ill, frightened and traumatized child.

 If you can, tell just one parent about the vaccine scare and the truth behind it- tell them vaccines are rigorously tested and if they want to really know about vaccines they should read a book on the history of vaccines and not just do bit of Googling and call it research. The websites about vaccines seem so plausible and are pseudoscientific enough to give them a real air of credibility. A little knowledge is a dangerous thing.

 

This has been Tannice Pendegrass, reporting live at QED for the Pod Delusion.

References:

http://www.guardian.co.uk/uk/2012/jul/27/infant-deaths-whooping-cough-epidemic

http://www.dailymail.co.uk/news/article-2262534/American-parents-awarded-600-000-compensation-son-developed-autism-result-MMR-vaccine.html

http://www.guardian.co.uk/commentisfree/2013/apr/08/measles-mmr-andrew-wakefield?INTCMP=SRCH

http://www.guardian.co.uk/society/2013/apr/06/what-happened-man-mmr-panic?INTCMP=SRCH

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004407.pub3/abstract;jsessionid=C6FEF218407B0196EEDC3F533115A40B.d04t04

Demicheli V, Rivetti A, Debalini MG, Di Pietrantonj C. Vaccines for measles, mumps and rubella in children. Cochrane Database of Systematic Reviews 2012, Issue 2. Art. No.: CD004407. DOI: 10.1002/14651858.CD004407.pub3.

Autism Talk Q & A

January 10, 2013

Last night I gave my Autism talk at Lewes Skeptics in the Pub. Someone tweeted the questions so I thought I’d write up what I said – plus extra bits – here on my blog, as promised. These are not complete, but I hope to add more in the future.

Are psychopathic tendencies linked to autistic diagnoses sociologically or clinically?

This question is related to my comments on the Aurora shooter and the more recent events at Sandy Hook – I stated in my talk that it really upsets me when people link Autism to violence. The key difference between autism and psychopathy that I see is that an Autistic person may not understand if they’ve upset someone where as a psychopath, on the whole, won’t care either way. Autism is not shorthand for psychopathy but they are very distinct things. For more information on my views on linking the Aurora shooter’s actions to his potential diagnoses (and therefore similar views on Sandy Hook), please check out this post (which ended up on the Pod Delusion podcast).

Distinctions between v low functioning and high functioning autistic are massive – do you think they will become separate diagnoses?

On the whole I’m not a fan of the descriptors ‘high-functioning’ and ‘low-functioning’, but they are common, shorthand qualifiers for how the general population describe the spectrum.

Without a diagnosis, you cannot get treatment. My main fear about the proposals of removing Asperger’s as a diagnosis and integrating those currently diagnosed as so within the Autism spectrum is that people will lose their support. I don’t believe there is good evidence at this juncture that Autism and Asperger’s are distinct diagnoses – as far as I can see they have a lot in common, with a core difference between the two being in terms of socialisation and language abilities.

My specific concern, since we cannot know until changes are implemented, is that people currently diagnosed with Asperger’s will be placed in classes with children who struggle more. Supporters of the changes argue that the broader definition will allow LEAs (Local Education Authorities) to provide more support, instead of less, in places where support for those with Asperger’s is not provided for. Of course, this remains to be seen.

ABA is time and money intensive – if speaking to policy makers, where would you suggest funds should go?

If we’re talking in a purely economical sense, I believe we can make a very successful argument for the provision of ABA at a young age – when I worked as an ABA tutor the cost for a year’s services – including consultants – was £30k per year. Let’s assume some rises and I would suggest a 3 years provision of services, for the sake of argument. If we’re talking about £100, 000 for 3 years and we assume that this intervention is as successful as possible then the argument is weighing £100k against a lifetime of intensive support – constant around the clock care and benefits. I believe there is simply no contest, especially when you factor in the pricelessness of someone’s quality of life.

I also believe that parents should be getting better support, especially when it comes to diagnosis – when parents find the diagnosis hard, they will turn to all avenues of support – evidence-based or not. 28% of people feel they received adequate advice on where to go to for information and support. That’s simply not good enough.

Vaccination – where can I find resources?

The course I have been on was by Coursera, led by Paul Offit. I believe this course will be offered again very soon and as soon as I am aware of a firm date I will let people know. I will write some post about vaccination in due course whilst addressing specific points that anti-vaccinators bring up when criticising immunisation. I recommend looking into how vaccines are made and how they were developed – not only is it fascinating, but it is only by addressing the ignorance behind the arguments that we can fight back against these myths and legends.

Are we in danger of pathologising extremities of the scope of human interactions?

That’s a really common criticism of the DSM and one I feel that does have some merit. However, this question, when contextualised in terms of Autism, is again due to a lack of knowledge about Autism. The idea of a spectrum does seem a nebulous concept, but what I take pains to explain is that although it is a spectrum, the criteria used to assess if a person appears on that spectrum is very specific. I hope to expand on this is a forthcoming blog post.

This question also brings up the idea that ‘we are all on the spectrum’ and while I champion the sentiment and intention behind the statement, I don’t believe it’s a particularly useful concept. People often use this to almost ‘normalise’ the idea of Autism in terms of helping people understand and celebrate differences between us but I also think it runs the risk of downplaying what is, more often than not, quite a debilitating disability.

I’ve heard that the Amish community do not vaccinate their children and they don’t have any Autism within their community – why is that?

I had heard about the idea the Amish don’t get Autism and it’s something that I haven’t fully looked into yet. However, based on the fact that Autism is not hindered by race, socioeconomic status or ethnicity, I find this very hard to believe and a very brief Google search leads me to believe it is in fact a myth. Interestingly, studies in Japan where they use a single vaccine and the fact that Autism is now increasingly being diagnosed before an MMR vaccine is given blow the idea that vaccination is the cause of Autism right out of the water.

 Neuroscience has been big growth area – any sneak previews of what is coming in terms of diagnoses?

 It was interesting to hear someone say they were surprised that we hadn’t cracked this yet, given we’re now into 2013. However, what should be noted is that we know far less about the brain than we do about other parts of the body. Neuroscience is a baby! We know what we do about it because of horrendous accidents and procedures like splitting brains – it’s not ethical to do too much poking around under the hood until there is something that needs treating and so we know so little about this organ with the consistency of tapioca. Sometimes I wish I could time travel to the future to discover what insights about the brain it holds.

 Unfortunately I am not a scientist (working on it!) and I can’t give any sneak previews in terms of that but an important point was made last night (not by me) regarding the influence of environment in addition to genetic predisposition. This should not be overlooked nor should it be used as a hook for blaming parenting skills or toxins, like mercury or immunisations, for the rising prevalence rates of Autism.

 Some investigation is underway into the link between low birth weight and Autism but I do believe that more work is required when it comes to the assortative mating and testosterone theories – I am not overly convinced, yet, of any explanatory explanation yet. At the moment we must focus on interventions focusing on the symptoms whilst science looks for answers on cause.

 This brings me to a point where I should make it clear that I do not advocate the idea of a cure of pre-screening foetuses for Autism – it’s a complicated and murky area full of shades of grey, but I truly believe a world without Autism would be a lesser one.

 

Teaching reading skills for ASD kids

September 21, 2012

Autistic kids often think visually and literally, so teaching reading skills with stories based in magical worlds, with princesses kissing talking frogs; stories completely distinct from reality, is not a good idea.

If your child has a specific interest – riding a bike/ playing with trains/ playing with dolls, then start off with really rewarding words that they’ll respond to. Don’t teach the alphabet in isolation – teach T, R, A, I and N and when they’ve mastered sounding out each letter, use those letters with others to spell other motivating words, like RAIN or TANK – act out what those words mean to excite the child and reward with the most stimulating reward you can find.

You could also associate the letters with a sign – using British Sign Language (the BSL alphabet is relatively easy to learn), so that the letter is associated with something physical and not just abstract. You could even work together to ask the child what the letter shape reminds them off – do brainstorming for each letter. It all depends on the abilities of your child.

Later you can teach the alphabet’s correct order – what’s important now is shaping with sound, rewarding for each gain, however small, and making it as fun and rewarding as you can.

Remember that different children learn at different paces. If you start to get disheartened or upset, stop and try again later. Your frustration will show and affect both your ways of teaching and your child’s ability to learn.

Comments, questions, ideas? Share them below!

 

In which I dispute the idea I am a shill for an industry I no longer work for

August 1, 2012

Tomorrow evening I will be talking to Royal Tunbridge Wells Skeptics on the topic of Autism treatments. My talk briefly focuses on a treatment that I term as ‘good’, rather than ‘bad’ or ‘ugly’.

Update: added definition of ABA, after suggestion in comments.

This treatment is Applied Behaviour Analysis (ABA). It is described by Wikipedia as:

“ a psychological approach that uses the theory of behaviorism to modify human behaviors as part of a learning or treatment process. Behavior analysts focus on the observable relationship of behavior to the environment to the exclusion of what they call “hypothetical constructs”.[1] By functionally assessing the relationship between a targeted behavior and the environment, the methods of ABA can be used to change that behavior. Research in applied behavior analysis ranges from behavioral intervention methods to basic research which investigates the rules by which humans adapt and maintain behavior.”

Source: http://en.wikipedia.org/wiki/Applied_behavior_analysis

I have been accused of being a shill for ABA and aspersions have been cast over the impartiality of host Tom Bruce and his relationship with me. These have come from a member of the group who has taken exception to my talk being put on. I do not have a problem with healthy debate and questioning, but I do have a problem with what an administrator of the page has (in my opinion) quite rightly described as ‘uniformed conjecture’. Bear in mind that none of the Tunbridge Wells Skeptics (including the hosts) have seen my talk yet – they have simply read the talk summary (linked at the end of the post).

The specific, baseless accusations about my motives can be found here (Facebook). I do not post the link to encourage anyone to fight my battles for me, just for some context.

I would like to say here, so it is on record, that I am not an ABA tutor. I made it clear in my talk descriptions that I am a former ABA tutor. I last worked as a tutor for 8 months in 2010. Before that, for a year or so in 2004 whilst at university.

I currently work as a proofreader, writer and editor as well as a day job for an insurance company while I save to further my education. Education in science, in case you wish to know.

The topic of Autism is one that has fascinated me since I was young and learned about it a little at Reigate college in 2001-2003. I then saw a posting for an ABA tutor at uni one day and, as I was studying behaviourism as part of a BSc in Psychology, I jumped at the chance to see it work in practice and make a worthwhile contribution to someone’s life. I stand by that decision as I know that the child benefited immensely from the coaching that I and others provided. However, I am not saying that it will work for every child nor that it is right for every family.

When I worked as a tutor I was coached by UKYAP and PEACH. I did not work directly for them, but for families. I was paid £10 an hour. This was about the going rate. I was part-time. in 2010 I was paid £12 an hour. Again, the going rate.

To accuse me of being a shill for ABA and to create other strawman (e.g. I am going around the country selling ABA whilst denigrating other treatments) is a complete lie.

Those who have actually seen my talk will know that ABA is tacked on to the end of my talk: I am primarily concerned with the harm of treatments with no evidence base. I am not interested in selling anything, nor do I need to. ABA stands upon its own evidence. Google has a wide selection of information on the topic.

I am solely concerned with raising awareness of quacks who seek to gain from treatments that cause harm. This is approximately more than 50% of my talk.

I also wish to make it clear that I will never and never have discredited parents and carers who have worked to make their children’s lives better – whatever treatment they choose. I understand (and talk about) the reasons that people choose the treatments they do. I believe that parents of autistic children have a hard enough job already and I do not seek to make it harder.

My sole aim is to let people know how to look out for harmful treatments and examine the evidence.

I will not tolerate lies about my motives. Skeptics in the Pub speakers (in my experience as a speaker and host of Guildford Skeptics) are never paid for their talks: they receive expenses only. I estimate that I have spent around 30 hours researching and putting together my talk. But not to gain from it financially. The topic of Autism is under constant research and I do my best to stay abreast of the latest evidence and scientific research.

I have also never posited myself as an ‘expert’ on the subject of Autism. When a speaker didn’t show for a talk at my Skeptics in the Pub group I decided I should make one myself. Autism has been a hot topic since the MMR hoax and I thought I should lend my experience in ABA to a talk focusing on bad treatments. Don’t criticise if you can’t provide a better solution, was what I was always told.

I’ll leave you with a definition of skepticism that I and some friends have worked on – the one I adhere to:

“Skepticism” is the practice of

  • critically evaluating claims against the available evidence
  • suspending judgement until there is sufficient evidence (my emphasis)
  • when the balance of evidence indicates that the claim should be held as valid, provisionally accepting it as true until such time as further evidence demonstrates it to be otherwise.

This sequence of doubt, inquiry and provisional acceptance is a method, not a position. Application of this method is more likely to determine what is true, or at least arrive at answers that are as close to the truth as currently possible. 

Crucially, all conclusions remain modifiable in the light of new evidence, but the more a particular claim flies in the face of our current understanding, the greater the weight of evidence is required to accept the claim. 

The practice of skepticism often includes reference to “bias”; biases are tendencies that we all have toward certain types of belief, or certain ways of thinking that are contrary to logic. Skeptics strive to identify and overcome these biases where possible.

“…the aim of rational debate is not for us to win, but for the truth to win” – Julian Baggini

Skeptics often refer to “Logical Fallacies” (although they are often referring to informal fallacies). A fallacy is a form of argument that is invalid because its conclusions do not follow from its premise, or it is a diversionary tactic away from the actual issue at hand. Skeptics aim to argue without resort to fallacy, and to counter fallacies in others’ arguments, as they indicate poor reasoning.

 

If you want to know more about my talk tomorrow, here is the information:

http://tunbridgewells.skepticsinthepub.org/Event.aspx/1136/Autism-Treatments–the-good-the-bad-and-the-ugly

 

Pod Delusion: Autism, Aurora and Joe Scarborough

July 27, 2012

 

Blame culture is rife in polemic TV – but it’s not Autism in this case.

on Thursday 26th July I was on the Pod Delusion, talking about Joe Scarborough’s comments about the Colorado shooter. Here’s the transcript of my little rant/speech.

A killing on the scale that Jon Holmes perpetrated will always engender a huge response; column inches about his appearance in court on Monday focused on his lack of emotion and the way he appeared to struggle to stay awake.

One American TV Show host has gone further though. MSNBC host Joe Scarborough suggested that James Holmes might be “on the autism scale”.

Irresponsible and inexcusable are the words that first sprang to mind when I heard that this had been said but I hadn’t really prepared myself to hear the full audio.

Joe Scarborough’s exact words were:

“As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected.”

On Monday The President of the Autistic Self Advocacy Network urged Scarborough and MSNBC to retract his comments and said

“No information on Mr. Holmes has suggested that he displays the diagnostic characteristics of autism and no evidence exists tying autism with violent behavior or threats to public safety.”

Autism is characterised by a lack of communication skills and struggles with typical social interaction. For someone with such a high profile to link violence with Autism is unkind, unfair and very, very misleading. In fact, there’s evidence to suggest that the Autistic are more likely to be the victim of violence than the perpetrators.

What’s at the very heart of Scarborough’s assertion is that Autism is somehow inextricably linked to sociopathy or psychopathy. This is the kind of misinformation that permeates popular culture and leads to the general idea that the Autistic mind is damaged and beyond help – something many doctors might say about a psychopath.

The truth is Autism is so much more complex than that. Someone who has been diagnosed as Asperger’s – a form of Autism which some people refer to as ‘high-functioning’ – often really enjoys social interaction and definitely tries to make friends. The key part of Autism that many people focus on is the difficulty in reading social cues and understanding others’ emotions. But this is absolutely NOT the same as having none of their own.

A psychopath may wear the mask of concern but usually is thinking through what he or she may gain from a situation. A person on the Autism scale may not notice your discomfort, or notice that something is wrong, but be unsure what that is.

One common aspect of Asperger’s is a self-fulfilling cycle: a teenager who always finds he says the wrong things in social situations (already fraught with difficulty due to hormonal changes that he might find difficult to deal with), may just withdraw into whatever it is he finds interesting. Humans are complex beings with emotions that an average person may find unfathomable, so when someone with Autism tells you they don’t understand why your voice has changed or why your face is in a weird configuration, they are identifying cues that a neurotypical person knows almost innately.

We need help for those on the Autism spectrum and we need understanding. I’m somewhat surprised that Scarborough, himself a father of a boy with Asperger’s, could so easily write off a community of people, comparing them with someone who has committed such an awful crime.

The discussion of the Colorado shootings at the Aurora theater should be focused on guns and how easy it is for anyone to get and use them. Dave Cullen, the author of ‘Columbine’, cautioned that we should be reticent to jump to too many conclusions about the killer: “Over the next several days”, he said, “you will be hit with all sorts of evidence fragments suggesting one motive or another. Don’t believe any one detail.” “Resist the temptation to extrapolate details prematurely into a whole”, he concluded.

I’m guessing Scarborough didn’t think this through.

Something like this can so easily undo all the hard work that Autism Advocates do in a heartbeat and we’re back to explaining that Rain Man was a fictionalised account of Kim Peek – an incredible man who actually didn’t have Autism, but FG syndrome. But don’t let the facts get in the way of an amateur diagnosis.

Unfortunately Scarborough does seem to have a lack of thorough knowledge of his son’s diagnosis as he apparently believes that his son’s Asperger’s is linked to thimerosal, a preservative within vaccines. Vaccines are, again, a whole different argument (one that’s tiresome given it’s proven there’s no link). In an effort to stamp on the misinformation out there I’m currently taking a course on vaccines so I can give a really educated response to those who seek to discredit what is arguably one of the greatest biological discoveries ever.

But, whilst writing this, I found that apparently Scarborough has issued some kind of statement. President of the Autistic Self Advocacy Network and representative for the National Council on Disability Ari Ne’eman (who has Asperger’s himself) issued this statement: “Joe Scarborough’s recent non-apology regarding his unfounded remarks suggesting the Aurora shooter is on the autism spectrum shows that he continues to miss the point. Not only did Scarborough refer to Autistic Americans as burdens on society, he also used his statement to promote the long standing fallacy of an “autism epidemic.” Furthermore, his use of Autism Speaks, an organization widely reviled within the Autistic community and without a single Autistic person on their board of directors, as political cover for his remarks indicates a lack of real understanding of the issues at stake.”

As a former tutor for children on the Autistic spectrum, I’m very passionate about providing good quality information about Autism, its definitions, the evidence-based therapies and interventions and, unfortunately, what quack treatments there are out there.

I’m taking my Autism talk around the countryand my August tour starts on August 2nd at Tunbridge Wells. I’m then heading to Brighton on the 13th, Horsham on the 14th and then I’m off to Edinburgh Skeptics on the Fringe on the 22nd. I’ll also be extending my run into September, on the 4th, in Nottingham.

[More info on why, what & where]

If you’d like to know more about Autism advocacy and/or like to get involved in an awareness campaign that I’m planning then please get in touch. My website is tannice.co.uk and you can contact me there or via Twitter.

Here because of Skeptics on the Fringe?

June 2, 2012

I’ll be writing a few articles between now and August 22nd in an attempt at self-promotion, which I’m not the best at. I’ll collect them here.

I’ve currently already got a post on what provoked me to launch myself as a speaker on the topic of autism. I’m planning some further blogs on cultural representations of autism, what people believe autism is and to cover other interventions or ‘treatments’ for Autism that I’m dubious about.

For more info on Edinburgh Skeptics on the Fringe, there’s a whole website on it, here.

First post: announcement (why, where and what I’ll be talking about). Dates: Aug 2nd (Royal Tunbridge Wells), Aug 13th (Horsham), Aug 14th (Brighton), Aug 22nd (Edinburgh) & Sept 4th (Nottingham).

Pod Delusion podcast transcript: Autism, the Colorado shootings and Joe Scarborough

Older posts: complete my survey! (survey now closed)

 

The August SitP Tour

June 2, 2012

The folks at Edinburgh Skeptics have been organising a skeptics on the fringe festival since 2010 and have seen fit to ask me to do my talk on definitions of autism, interventions, cultural representations and Applied Behaviour Analysis (ABA) on August 22nd, 2012.

I’m also booked to speak at Royal Tunbridge Wells Skeptics, Brighton Skeptics and Horsham Skeptics in August and I turn 27 on the 9th, so it will be a very busy month indeed!

UPDATE:  booked at Nottingham for September 4th. 

As the information on the Skeptics on the Fringe website points visitors to this here website, I thought I’d provide a bit more information on what I’m going to be talking about and why. Dates, links and details of the upcoming August dates are at the end of the post.

Studying and working

In 2004 I was studying psychology and noticed a sign on the uni psychology noticeboard about ABA. I was learning about Skinnerian behaviourism at the time and doing a module that included Autism on the syllabus. I’d seen the film Rainman and had a few ideas about what Autism was. I was also vaguely aware of the MMR vaccines scandal but wasn’t fully aware, at that point, how bad it was or would get.

I applied to be a tutor for the child, (who I’ll call Jack, to preserve his anonymity) and started learning more about ABA. I was very lucky and, I feel, privileged to work with such a delightful, wonderful child. Jack completely confounded all my expectations about what Autism is and I loved working with him. I worked with Jack until he went to a mainstream nursery and his available one-to-one home tutoring time clashed with my lectures and seminars.

Getting skeptical

In 2008 I left Cambridge to come back to Reigate, where I still live, and embarked on a period of self-employed work as a freelance writer, editor and part-time ABA tutor. In 2011 I joined Guildford Skeptics, which I now run. It was after I started identifying as a ‘skeptic’, in around 2010, after finding the Skeptics’ Guide to the Universe and Skeptics with a K podcasts, that I started realising that some of the interventions and ‘treatments’ that many Autistic Spectrum Disorder (ASD) children were undergoing were pseudoscientific, often actively harmful and sometimes downright dangerous. And I got angry. The list is almost endless, but treatments involve Acupuncture, Ayurvedic, Chinese Medicine, Chiropractic, Chelation*, Homeopathy, Hyperbaric Oxygen Therapy* (HBOT), Holding/Hugging Therapy, Energy Medicine, Facilitated Communication,  Secretin* and Lupron*.

* Chelation, HBOT, Secretin and Lupron are the treatments I’ve chosen to focus on for my talk.

Taking action against quacks

One evening I resolved to do something about it, even if it was just raising awareness, and my idea for a three-part talk was born. The first part of my talk is about the results from 700 people who completed my autism survey. In a further post, sometime in the near future, I will present my results in full, but not before I present them live, on stage, at Horsham, Brighton, Edinburgh and Tunbridge Wells (date of the latter yet to be confirmed).

I’ve now done my talk twice – at Guildford and at Hackney and I’ve had some good feedback from some ASD people and from some representatives from HiPHackney, an  independent forum for parents and carers of children with disabilities in Hackney:

Hackney skeptics tweeted: I gather lots of you were here for the first time and were coming more for autism than skepticism? Hip Hackney tweeted: through the ASD grapevine locally. We run a forum for parents of kids with disabilities; a couple of parents saw your poster. Hip Hackney tweeted: yes but maybe not for the last time! ASD parents need skeptics! Well done for spreading awareness through evidence. Hip Hackney tweeted: @HackneySitp @tannice_ yes massive thanks to Tannice. She did an amazing job dealing with all us obsessive ASD parents. Well done all. HipHackney tweeted: in reply to @RDGrainger (how did the skeptics talk go?) just fab - she did a great job - all about the evidence really. Some treatments for ASD are nothing more than child abuse...

Image has Alt Text or click here to read the tweets pictured above.

If you represent a charity or organisation for children with disabilities or a specific group for Autism, please do get in contact as I have further plans afoot. Watch this space and, if you can, come along to see my talk on any of these dates:

Talk dates

August 2, Tunbridge Wells, The Grey Lady

August 13, Horsham, The Tanner’s Arms

August 14, Brighton, Caroline of Brunswick (ticketed event)

August 22: Edinburgh Skeptics on the Fringe, Banshee Labyrinth 

September 4: Nottingham Skeptics, Fellows Morton and Clayton (details not on website as yet)

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