The Transparent Psychologist

Bringing transparency to neuroscience, including recent advances in clinical psychology, human brain imaging and cognitive science. De-bunking myths and critically evaluating research. Exploring how the public interacts with neuroscience by examining popular coverage in the media.

Month: July, 2013

Interview with John Williams: Parent of a Child with Autism, Author of the Blog and New Comedy Show ‘My Son’s Not Rainman’

“ ‘My Son’s Not Rainman’ is a new show for 2013 from comedian John Williams. It’s a show about finding the positive in everything, from the joy and wonder of the Special School Disco to the unadulterated thrill of getting the front seat on the Docklands Light Railway. Ultimately, it’s just an uplifting tale about what it really means to be different.”

http://www.mysonsnotrainman.com/about.html

rainmanlarge

Biography:

John is a dad.

He’s also a comedian (Laughing Horse New Act of the Year Finalist, Jokers’ Joker of the Year). He trained at Royal Scottish Academy of Music and Drama until they chucked him out.

This is his first solo show, and the blog is the first thing he has written since leaving school far too many years ago.

This story couldn’t be told without The Boy.

He’s the autistic one.

He’s the most amazing, frustrating, contradictory boy in the world.

He has never drawn a charcoal sketch of the London skyline or memorised a train timetable.

Background:

I went to see John’s show earlier this month and https://leilajameel.wordpress.com/2013/07/03/my-sons-not-rainman-is-laughing-about-being-different-a-good-thing/wrote a glowing review.

I was impressed by John’s commitment to challenging people’s perception of what is ‘normal’ and also the stereotypical view of autism. He skilfully uses humour to break down awkward barriers that make it hard to talk about disability and being different.

John has kindly agreed to do a follow-on interview for ‘The Transparent Psychologist’. So, here goes!

Interview:

LJ – Leila Jameel

JW – John Williams

Blogger and Comedian

LJ: John, thanks for agreeing to talk to me! Tell me, why did you decide to start the blog and then the comedy show?

JW: For a long time I wanted to try to find a way to share with people what it’s like bringing up a child who’s different. I wanted people to be more accepting of those with autism, and I became increasingly frustrated that some of the more challenging behaviours that can be so prevalent are never talked about. My hope was that if I could find a way to share our story people might become more accepting in the future. And I wanted to dispel the myth that life with a child with additional needs is always grey. My son brings light into my world. We laugh and joke a great deal. Ours is a happy life, even if a little unconventional at times!

LJ: Do you think that using humour makes it easier to talk about difficult things?

JW: I guess so – it certainly makes stuff more accessible. I’m always aware that the flip-side is there’s a danger that it’s then seen as mocking or treating a subject flippantly – it’s a fine balance as you mentioned in your review of my show, and it’s one that makes me nervous all the time.

LJ: How do you decide which bits of material will or won’t work?

JW: The main test is if it makes me laugh. And after that it’s just trying it out on an audience to see if they agree. The previews for the show have been really useful for that. With the blogs, it’s different. I so often sit down to write a blog about “x” and then suddenly I find I’ve written about something completely different. There’s less pressure to be funny with the blog too!

LJ: Have you written any jokes that you thought maybe push the boundaries too far?

JW: I’d say no. I don’t really write jokes in the conventional sense – everything in the show is based on an event that has happened, and that’s where the humour comes from. In many ways it’s a collection of funny stories rather than a series of jokes. I use my son as the guide. If I thought there was anything in the show that he would one day be uncomfortable with, then I’d stop saying it immediately.

LJ: What is your favourite story from your show?

JW: Without giving too much away, it’s probably the story of the special school disco. People talk about the rollercoaster of emotions from the show – and I think that afternoon at the disco sums it up better than most. It was one of the most joyful things I’ve ever witnessed, only tinged with regret that not everybody in the world gets to share in it. The world would be a much better place in lots of ways if more people experienced the delights of a special school disco!

LJ: So what are your plans for both the blog and the comedy show?

JW: I don’t know really – both have taken off far more than I ever thought they would, and I’m a little blown away by it all. It would be nice to tour the show in some way, but I’m mindful of childcare and lots of other issues. Any plans for the future will always involve my son coming first, but I’d love to continue sharing our story in whatever way works for us.

LJ: You are patron of a charity ‘Expresscic.org.uk’ – can you tell us what they do?

JW: I met Annette and Tracey at one of my comedy nights – they are two mums of children with autism based in Kingston-upon-Thames, Surrey. Their aim is set up a ‘hub’ or cafe for young people on the autistic spectrum and their families. A place to talk, share and laugh, all created with sensory issues in mind. I loved the idea and have done a couple of fundraising shows with some other comedian friends to help out. They asked me to become their patron, and I was delighted – they work very hard and deserve every success. It would be great to imagine their plans for Kingston rolled out across the country.

Parent of The Boy

LJ: What did you think/feel when your son was first diagnosed with autism? How much did you know about it beforehand, and how much support were you offered?

JW: I suppose it was relief in the end. We knew something was wrong, but in many ways my son doesn’t fit the classic diagnosis for autism at all. There are times now when I question his diagnosis, I don’t know if that’s something all parents go through. In terms of support, there was none. You got the label and that was it. However, there was a local National Autistic Society (http://www.autism.org.uk) support worker who was really helpful. This was some years ago now, and I hope things have changed for the better now.

LJ: How has having a son with autism affected your life?

JW: With or without autism, he has brought joy and light and wonder into my world. I am an infinitely better person for having him in my life. It’s a bit of a cliché, but the day I became a parent is the day I realised what it really means to be alive.

LJ: What advice would you give parents out there whose child has just received a diagnosis?

JW: I don’t know if I can offer any – I’m just a bloke sorting through it like everyone else. Google is your friend, but it’s very much your enemy too. There are some weird and wonderful resources and claims made out there, so choose carefully who or what you listen to! I don’t want to come across as trite by saying things will get better, as for some it does and some it doesn’t. All I can say is for each day try to find the joy. There will be some days where it’s harder to find than others, but it will be there.

LJ: I get the feeling that seeing the funny side has helped you through some difficult times…?

JW: I didn’t always see the positive, let’s put it like that… I think over the years I’ve realised that my being positive has a huge impact on my son. I suppose I’m his role model in this, and I can either choose to be consumed by regret and sadness or we can both decide to live each day with fun and happiness.

LJ: Many parents of children with autism are anxious about their child’s future. What worries you the most?

JW: The horror stories of service for adults on the autistic spectrum. The lack of support available from the age of 18 is a real concern, and although I think there have been some improvements, there is still a huge deficit. Although getting the right education for my son has been a battles at times, adulthood opens up a whole new battleground – employment, housing, social care, the list goes on. I suppose the main worry is what will happen if/when I am no longer around – I don’t think that ever goes away.

LJ: Do you think labels such as ‘autism’ are helpful in explaining someone’s difficulties, or a dangerous reflection of our inability to accept people and behaviours that are different?

JW: I do understand the need for labels, but sometimes we can’t lump everything into a nice, neat group and pigeonhole people. First and foremost my son is a person. A unique person with his own identity, needs, wants and wishes – as is every other person with autism. If we put ‘everybody who has blue eyes’ into a group, we wouldn’t expect them to interact and behave in the same way as we seem to do with those with autism. Sometimes it feels like doctors and physicians become so wrapped up in labels and expected behaviour traits that they forget to look at the person in front of them as just that. A person. A unique individual. Labels are useful for getting the right support – statementing for schools, disability living allowance and so on. But so many times concerns or worries about my son have been dismissed with the words “it’s because he’s autistic”. He isn’t. It won’t define him. He’s an individual with autism. There’s a huge difference

LJ: What is the hardest thing about having a son with autism?

JW: Knowing I can never climb inside him and see the world the way he sees it, even for just a moment. And then maybe I’d be better able to support him. But everything is relative. My son has speech, he can read, laugh and joke. There are so many with autism who are non-verbal, or more severe than he is. Many times I’m reminded just how lucky we are.

LJ: Do you think there any pros to having autism?

JW: That question will never be for me to answer, it will always be for my son. There isn’t a defining line where he ends and the autism begins. Does he have a sense of humour because of his autism or in spite of it? I’ll never know which aspects of his personality are ‘him’ and which are ‘autism’. I do really hope that one day he can say Yes there are pros to this. At the moment, I’m not so sure.

LJ: Thank you for your frank and honest answers John! I wish you every success with the blog and show.

John’s blog – http://www.mysonsnotrainman.com/blog.html

Follow John on Twitter – @Autistic_Kid

John will be performing at the Edinburgh Fringe Festival, 1 August – 25th August, and is planning more UK dates!

Why you are PROBABLY wrong

What do a gambler, a doctor, and a juror all have in common?

Betting. Interpreting the odds to decide wether to make that last bet or count your blessings and call it a night.  

Diagnosis. Using genetic testing to inform a patient’s life time risk of a disease and thus a suitable course of treatment. 

Sentencing. Assessing the evidence to calculate the likelihood that a defendant is guilty.

All of these people use probability to make and inform important decisions.

Predicting the future: Gambling

Tarot readers and psychics aside, most of us accept we cannot predict the future. Nevertheless, we use probability in our daily life to determine how likely it is that something will, or will not, happen. Take the example of flipping a coin. Some prefer to call ‘heads’ and some ‘tails’, but there is a 50% chance of the coin landing on either side. Yet, cognitive psychology reveals we are not objective at using probability to make predictions. Now suppose the coin is flipped three times and each time lands on heads – whilst this is unlikely, it is not improbable. If you had to bet £100 on the next toss, which side would you choose?

The odds remain 50:50. It does not matter which side it landed on before. However, a classic study by Tverksy and Kahneman (1971) found people believed that tails was more probable after a run of three heads. This was coined (pardon the pun!) the “gamblers fallacy” and highlights our naive belief that a successful outcome is due after a run of bad luck – which may well be a gambler’s downfall! Daily life is littered with sayings such as; “You wait all day for a bus and then two come at once!”. Whilst improbable things happen more often than we realise, sayings like this ascribe a hidden belief in karma, which may undermine our ability to be rational decision makers. 

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Diagnosing the present: Doctors

Imagine you are a doctor screening a woman for breast cancer. You find a lump, and based on your experience estimate the probability of it being cancerous is just 1%. Nevertheless, modern technology can help identify whether or not it is indeed cancer, and inform treatment. So you send her for a test, which accurately classifies roughly 80% of cancerous, and 90% of benign (non-cancerous) tumors. The result is positive: it is cancerous.What is your estimate of the overall probability of the lump being cancerous given your initial estimate, and the reliability of the test result?

Researchers asked doctors to solve this problem (Eddy, 1982). 95/100 estimated the probability of the lump being cancerous was around 75%. They were way off! The correct answer is drastically lower, at 7-8%. The doctors assumed the chance of the woman having cancer given a positive result was equal to that of a positive test result if she actually had cancer, and so inaccurately inflated their estimates. In clinical settings, where life and death decisions must be made probabilistic errors are no laughing matter.

This mistake is known as “confusion of the inverse”. In order to understand why the correct answer should only be 7-8% we need to do some maths! According to ‘Bayes theorem‘ – a subtle rule of probability – the correct way to estimate the odds of cancer given a positive test result is as follows.

Probability of cancer given that the test results are positive:

p(cancer|positive) =

p(positive|cancer) p(cancer) / p(positive|cancer) p(cancer) + p(positive|benign) p(benign)

Where:

p(cancer) = the original estimate of 1% probability of cancer = .01

p(benign) = the remaining 99% probability of not having cancer = .99

p(positive|cancer) = an 80% chance of a positive test result given cancer = .80

p(positive|benign) = a 10% chance of falsely identifying a benign tumor as malignant = .10

(.80) (.01) / (.80) (.01) + (.10) (.99)

=

.008 / .107

=

.075

=

7.5%

Adapted from: Plous (1993)

Bayes theorem emphasises the importance of paying attention to the ‘prior probability‘ – the best estimate of a probability before a new piece of information is known. In the cancer problem, the initial estimate was very low at only 1%, but the doctor’s allowed this to become contaminated by the new information provided by the test, forgetting that it was only 80-90% accurate. If something is extremely probable or improbable, then it is important to not inaccurately update it according to an unreliable piece of information.

Establishing the past: Jurors

Jurors must weight different strands of evidence and integrate these into a whole to estimate how likely it is that a suspect “dun it”. Increasingly cases rely on forensic evidence, including DNA samples, which require an assessment of probabilities. Several problems with the way people interpret such evidence have been identified. A DNA sample from the perpetrator matches 1 in a 1,000,000 individuals at random. If a match is found for a suspect, what are the odds that the suspect is innocent?

People confuse these two calculations, estimating the likelihood of innocence to also be 1 in a 1,000,000. Lawyers call this mistake “the prosecutor’s fallacy”, when people confuse the odds associated with a piece of evidence with the odds of guilt. Experimental work also suggests people are sensitive to subtle changes in how probabilistic evidence is presented. Dr Itiel Dror, a cognitive neuroscientist from University College London explains, “I could say you have a 1/100 or .01 chance of dying from some risk factor – people do not weight these as equal, even though they are the same information presented in different ways. Jurors are affected by evidence in this way.” In 2011, a judge ruled against presenting statistics as evidence to jurors, which calculate the odds of one event happening given the odds of other related events. For instance, forensic scientists use theorems to establish how likely it is that a shoe-print left at the crime scene comes from a pair of trainers found at the suspect’s house, given how common that model of shoe is, its size, how worn down the sole is etc. However, lay people do not understand this logic, easily becoming confused by the complex math underlying it, enhancing the risk of poorly informed decision making.

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Use  probability with caution

Estimating and using probability presents all kinds of daily dilemmas. What is the solution? Firstly, remember we are subject to using folklore to explain entirely probable occurrences. Secondly, pay attention to prior probability, i.e. the initial 1% cancer estimation, and do not be too heavily swayed by new evidence, which might lead to inaccurate updating of an estimate. It is important to remember that according to Bayes theorem the absolute difference between the revised probability and prior probability should not be large. Finally, when evaluating probabilistic evidence, remember the devil is in the detail!

References

Bayes, T., & Price, R. (1763). “An Essay towards solving a Problem in the Doctrine of Chance. By the late Rev. Mr. Bayes, communicated by Mr. Price, in a letter to John Canton, M. A. and F. R. S.”. Philosophical Transactions of the Royal Society of London 53 (0): 370–418.

Eddy, D. M., (1982). Probabilistic Reasoning in Clinical Medicine: Problems and Opportunities. In Kahneman, Slovic & Tversky (Eds.) Judgment under uncertainty: Heuristics and biases (pp. 249–267). New York: Cambridge University Press.

Plous, S. (1993). The Psychology of Judgment and Decision-Making. New York: McGraw-Hill.

Tversky, A., Kahneman, D. (1971). “Belief in the Law of Small Numbers”. Psychological Bulletin 76 (2): 105–110.

My Son’s Not Rainman: Is Laughing About Being Different a Good Thing?

On Monday night I went to see a show called ‘My Son’s Not Rainman’ by comedian John Williams, and father of a young boy with autism. I wasn’t entirely sure what I was in for, and although I knew I had come to see a show about autism, I didn’t realise it was stand-up comedy until the lights went down…

As it dawned upon me that this was a comedian making ….err… jokes about …umm…. autism, a serious neurodevelopmental disorder that I spend most of my time trying to get to grips with, I felt quite awkward. But, by the time we got to the “Let’s trivialise a major brain disorder in 60 seconds” section of the show, where John proceeded to list a string of ‘interesting facts’ about autism and his son’s specific variant, I was sold! I found myself laughing my head off to John’s genuine and humorous perspective of living with even the most challenging aspects of autism. Somehow, John managed to turn the most non-PC material into hilarious, but sensitively true insights. And, the whole audience, mainly composed of family members of those with autism and people who work with autistic individuals, was laughing with me.

We heard about how his son uses a wheelchair to avoid becoming fatigued from his cerebral palsy, and how this lead to an interesting situation at mini-golf. We chuckled along to the tale of his son’s obsession with biting – people, objects, anything! – and how this particular pastime has led to a exclusion from a number of establishments, including a special school for children on the autistic spectrum (go figure!). We giggled about how his son’s inability to separate reality from fantasy resulted in a rather disappointing experience with an Omnitrix, but on the upside allowed he and his Dad to enjoy a ‘magical’ ride on the DLR instead of forking out for a ticket to Thorpe Park!

rain_man_casino

It felt safe to laugh, even when we were on very thin ice material wise. Why? Because we weren’t laughing at his son, or even at autism, we were laughing at how ridiculously how hard it is to be someone, or live with someone, who doesn’t understand the world around them, and how sometimes society makes it even harder.

There were tender moments too. John displayed an absolute and unconditional love for his son, and it became clear that his blog and comedy help him to keep strong for both of their sake’s. Making light of a bad situation is a form of coping mechanism. By making something normally dark and difficult to talk about funny you can also tell the truth, and make people listen and think. Laughing about it somehow makes it okay and breaks down those barriers, and allows for important messages to be sent.

Needless to say, this has been rattling around my thoughts ever since. And, I should point out that in general I don’t think laughing about disability is okay… Indeed for my very first blog post (https://leilajameel.wordpress.com/2013/03/14/the-modern-freak-show-our-obsession-with-the-weird-and-wonderful/), I discussed the problem of TV shows which feature disability becoming ‘entertainment’, and I questioned whether this is a form of modern freakshow.

I have since racked my brain, trying to justify why it is okay to laugh at the fine line John treads along this precarious balance. Not only does John have credibility, he does the show his way. He hopes to portray autism with its warts and all. Media depictions of autism tend to focus on the story of someone who struggles with social-communication, but who like Rainman can count cards in a casino, or from memory draw St Paul’s cathedral in minute and accurate detail. Now, whilst there are people on the autistic spectrum with savant skills, this is a minority, and autism is just that – a spectrum, with every variant imaginable, and unimaginable too!

John’s bloghttp://www.mysonsnotrainman.com/blog.html

Follow John on Twitter – @Autistic_Kid

John will be performing at the Edinburgh Fringe Festival, 1 August – 25th August, and is planning more UK dates!