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.

Tag: Autism spectrum

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!

An Anthropologist On Mars: Will We Ever Reach A Consensus On Autism?

Autism has had a troubled history. From its birth in the 1940’s, to its present form, and proposed changes, its conceptualisation and diagnosis remains a controversial issue. With DSM-V set to kick in this year, comes a new set of diagnostic guidelines, and rising concerns that mild forms of the disorder may no longer be recognised. Here I discuss a brief historical overview of autism, and what the proposed changes to DSM-V may mean for people ‘on the spectrum’. 

“Life on Mars” and Beyond: What is Autism?

Autism is a neurodevelopmental disorder, characterised by a ‘triad of impairments’ in social interaction, communication, and repetitive or restricted behaviours and interests. Temple Grandin, a noted academic and autism activist, famously described her inability to understand the social world as leaving her feeling “like an anthropologist on Mars”. Impairments in communication have been identified at the level of basic language acquisition, up-to the sophisticated linguistic level of intention understanding and sarcasm. People with autism may take things literally, sometimes causing huge misunderstanding. For instance, the expression “You’re pulling my leg”, “Have you changed your mind?” or “It caught my eye” might cause confusion, and even concern to someone who has difficulty interpreting non-literal language! Restricted behaviors and interests may include included repetitive movements (known as stereotypy), compulsive behaviours, a resistance to change, or ritualistic behaviors. Other aspects, such as atypical eating, or sensory sensitivity are also common but are not essential criteria for a diagnosis.

From Greek Beginnings to London: a Brief History of Autism

In 1943 child psychiatrist Leo Kanner was the first to clearly define autism. He recognised 11 children in his clinic in Baltimore who showed virtually no interest in other people or the outside world. He described this profile as ‘autistic aloneness’, borrowing the term ‘autism’ from the Swiss psychiatrist Eugene Bleuler who had used it to describe the inward, self-absorbed aspects of adults with schizophrenia – the term comes from the Greek word ‘autos’ that means ‘self’. Kanner did not however consider autism an infantile form of schizophrenia, recognising that the clinical symptoms were distinct and present from birth.

In Chicago in the 1960’s Bruno Bettelheim portrayed children with autism as living in a ‘glass bubble’. He controversially viewed autism as a severe reaction to an unaffectionate maternal relationship, leading to a drastic form of treatment called ‘parentectomy’ – the removal of the child from his or her parents. This was done in the hope that the child’s development would improve once removed from the supposedly hostile and uncaring home environment, but no evidence was found to support this, and his theory fell into disrepute. However, sadly this view stuck for sometime.

In the period between the 1940’s and late 1980’s autism was conceptualised as a rare and categorically distinct, where people with autism were set apart from the rest of the population. Lorna Wing, a psychiatrist based in London, and mother of a child with autism, was a founding member of the ‘National Autistic Society’. In the 1980’s she suggested that the prevailing view of autism as a rare categorical disorder was out-dated. Her research indicated that autism was a spectrum, and far more common than previous estimates had indicated.

The Current State of Affairs: Are We All On A Spectrum?

In recent years Wing’s view of autism has been widely taken up, and developed further by academics and clinicians such as Uta Frith and Christopher Gillberg. Autism it now considered a spectrum condition, meaning that while all people with autism share certain difficulties, the severity of the condition and how it affects an individual varies largely. This range is enormous, branching the gulf between non-verbal individuals who may have accompanying learning disabilities and require a lifetime of professional support, to extremely high-functioning individuals who are actively recruited in the technology industry for their specialist skills.

From a diagnostic point of view, clinicians have become more sensitive to the many faces of autism, able to identify core deficits in social and communication skills, in the absence of more global disability. And, with this broadening of the autistic spectrum, different sub-types have emerged. At the milder end of the spectrum we have Asperger Syndrome (AS). In 1944 Han Asperger, an Austrian pediatrician published a definition of ‘autistic psychopathy’. He was working in isolation of Kanner, and it is unclear if they were even aware of each other’s work. Asperger identified four boys with a pattern of behaviour and abilities that included a lack of empathy, reduced ability to form friendships, one-sided conversations, and intense absorption in a special interest. Asperger described these children as “little professors” because of their ability to talk about their favorite subject at length and in great detail. Asperger’s work was written in German, and he died before his identification of this pattern of behavior became widely recognised. In the early 1990’s AS gained some interest following Wing and Frith’s research on a recent translation, which lead to the inclusion of the condition to DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Revision – more about this later!) in 1994, exactly half a century after the original research. Despite this resurgence of interest, AS remained a controversial and contentious diagnosis due to its unclear relationship to the autistic spectrum.

The label AS is currently given to people who are of average, or above average intelligence, who fit other autistic criteria, but do not display difficulties in language. Individuals who fit this brief, but have a concurrent history of language delay and/ or impairment are labeled with high-functioning autism (HFA). A huge amount of research has been conducted to examine the relationship between AS and the autistic spectrum, and the differences between AS and HFA. To summarise this vast literature briefly, both people with HFA and AS are affected by the ‘triad of impairments’, common to all people with autism. Both groups are likely to be of average or above average intelligence. However, there may be features such as age of onset, language impairment and motor skill deficits, which differentiate the two conditions. Beyond childhood, however, HFA and AS are thought to be relatively indistinguishable.

The view of an autistic spectrum has been expanded even further in the last decade or so. Simon Baron-Cohen developed a questionnaire (The Autism Quotient) to measure autistic traits for the purposes of screening those with AS or HFA. Research using such measures has recently suggested that the traits may be normally distributed in the population, and that those with an autistic spectrum condition diagnosis sit at the tail end.

Re-defining Autism: DSM-V

The debate as to whether we need two diagnostic terms for AS and HFA has been raging. Researchers have been trying to establish whether there is indeed a continuous spectrum of autistic traits, where the clinical cut-off should be, and how we should conceptualise these different labels. DSM-V is due in May of this year and as a culmination of a 14 year review process BIG changes are once again planned for how we view and diagnosis autism.

But what is DSM, and what do the changes mean? DSM is a publication of the American Psychiatric Association, which provides a common language and standard criteria for the classification of all mental disorders. The DSM is used in the US, and to some extent and various degrees around the world. It is used by clinicians and researchers, and relied upon by psychiatric drug regulation agencies, health insurance companies, pharmaceutical companies and policy makers. So, it has a huge influence on many aspects of how those with mental disorders are classified and interact with the world.

In DSM-V (the 5th edition of the manual, due out in May of this year) separate diagnostic labels of autism or classic autism, HFA and AS will be replaced by one umbrella term “Autism Spectrum Disorder” (ASD). This spectrum will include a variety of clinical identifiers and associated features, which will be used to indicate severity in each domain and describe an individual’s clinical presentation. The DSM-V revision website states that the umbrella term of ASD has been proposed in order to address issues with diagnostic reliability and overlap between the subtypes. It appears that under the current system inter-rater reliability was poor (i.e. different clinicians diagnose the same person with different disorders), and that even intra-reliability was a problem (i.e. the same clinician diagnoses the same symptom profile differently across time). Furthermore, there is a lack of evidence supporting differential outcomes or difficulties for those with different sub-types, suggesting that autism is defined by a common set of behaviours and should be characterised by a single name according to severity.

Revisions to the specific criteria required to receive a diagnosis of ASD have also been made. Firstly, the new criteria are more thorough and strict compared. Secondly, at the social interaction and communication domains of impairment will be combined into one, titled “Social/Communication Deficits.” Finally, the requirement of a delay in language development is no longer necessary for a diagnosis.

The Implications

The revisions to DSM-V are proposed in hope of making the diagnosis of ASD more specific, reliable, and valid. Whilst these revisions are based on research, analysis, and expert opinion, various high-profile people have spoken out highlighting potential pitfalls. It is the removal of AS which has sparked the most attention. Individuals, who currently hold this diagnosis, may need re-evaluation or further treatment and condition management. At this stage, they will probably receive a different diagnosis, which has the potential to be very confusing, especially for individuals’ who identify strongly with their diagnosis. Furthermore, with the tightening up of specific criteria there are legitimate concerns that people who are currently diagnosed with one of the higher-functioning (HFA/AS) subtypes will no longer meet the more strict diagnostic criteria, and may experience difficulties qualifying for and accessing services. There is a lot of anxiety and uncertainty surrounding how policy makers and insurance companies will interpret these revisions, and how state funding and educational services will adopt the changes.

In recent times autism has come to represent many things, and is even considered a positive asset in some areas of life. With the advent of Baron-Cohen’s Autism Quotient, remarking ‘we are all a bit autistic’ has even become very on-trend. Returning to the history of autism briefly… Back in the 1940’s Hans Asperger, noticed that many of the children he identified as autistic used their special talents in adulthood and went on to have successful careers. Indeed, one of them became a Professor of Astronomy and another won a Nobel prize in Literature. A modern equivalent of this is the German company ‘Auticon’ who recognise the specialist talents of many people with AS despite their limitations. They employ people with AS as software testers and offer their services to companies.

What is clear is that these changes will have a big impact on people with ASD and their families. It remains to be seen how clinicians will use the diagnostic criteria, and whether the revisions will lead to improvements in our understanding of and provision for ASD or not. I think there is a conflict between recognising the talents and strengths of those on the spectrum, through programs such as that of Auticon, and not dismissing the specific but pervasive challenges that being a high-functioning person with autistic symptoms (whatever the label!) poses. Re-writing the definition of autism again may, or may not be the answer, only time will tell. But, I don’t think the story ends here… 

The Modern Freak Show? Our Obsession With The Weird and Wonderful.

The recent slew of TV programs about ‘weird and wonderful’ people raises interesting questions. What is the purpose of these shows; to inform and educate, or to entertain? From “The Town that caught Tourette’s” to “Obsessive Compulsive Hoarders”, 4od is awash with documentaries about extraordinary people. But, they aren’t just extraordinary, some of the subjects of these shows are very, very ill. Some of them struggle to function in everyday life as a result of their conditions or disabilities. 

The Undateables” is a channel 4 documentary that has become a hit show, and has just been commissioned for its third series. The premise is that people living with challenging conditions are often considered ‘undateable’. The series meets some of these people and follows them on their quest for love. So what is the point of putting cameras in their life to document their perspective’s and struggles? Is it to give us a right old laugh at their expense, or to sympathise with their needs? And is it all doom and gloom, or can they inspire us by demonstrating a positive outlook in often dire circumstances?

It features a range of people with a range of difficulties. We have met a couple of Tourette’s sufferers, whose attempts to suppress their less-than-appropriate-date-time tics are excruciating to watch. On the other hand, it is also refreshing to see this condition represented in a serious light. The coverage of people with Tourette’s Syndrome tends to focus on the hilarity of involuntarily shouting obscenities. Having worked with people with Tourette’s I know this is far from the truth; it not only affects their love lives but every single aspect of their daily life.

We have also met a couple of people with Autistic Spectrum Disorders. From Michael whose conversation relies on catch phrases he has rote learnt, or prompts on his phone from his mum, to Richard, to whom the prospect of dating someone from outside of a 5-mile radius is terrifying. Again, I find a tension; between documenting how the mundane and everyday to you and I is extremely challenging for these individuals, and exploiting their difficulties to pull in viewers like spectators to a circus.

As one would expect public opinion has been mixed on this… a quick search on twitter reveals an awful lot of encouraging tweets such as “I really do love the #Undateables …they are all inspiring people…”*. On the other hand, there is also some rather less ‘positive’ exposure, for example, “I got my mum a bunch of flowers. I am sitting at the front of the bus with them looking like a fat virgin on his first date #Undateable.”*

*Tweets have been paraphrased to protect author anonymity!

The advertising watchdog has received complaints that the show is offensive towards disabled people, and encourages stereotyping and bullying. And, the individual’s featured ability to make an informed decision to consent has also been called into question. While Channel 4 argue that they hope to change perceptions of disability, the show has been attacked in the media for clearly setting up a distinction between disabled people and non-disabled people. Surely the way to address this is normalise rather than emphasise the differences between us all? Whilst showing disabled people dating is a rather radical concept, the show capitalizes on the paramount difficulties this poses the individuals featured. Instead it should focus on the fact that everyone, disabled and non-disabled alike, wants to find “the one” and that for many people it is a challenging and demoralizing experience!