Autism Series 2013 – Part 2: The History Of Autism

“We can chart our future clearly and wisely only when we know the path which has led to the present.” Adlai E. Stevenson

I always thought history was boring, and I must admit, If you want to put me to sleep, start reading early Australian history to me. “Convicts … first fleet … zzzzzz.”

But as Stevenson wrote, the key to the future is the past. With autism, I don’t want to see a future as checkered as its past. In this series of essays, I want to help our community see a future in which autism is recognised and appreciated for its strengths. To properly lay the groundwork, I want to look at the history of autism. This will help provide context for the current understanding of autism, which will then give a framework for understanding the autistic person, and for a glimpse into the future as new research unfolds.

The autistic spectrum has been present for as long as humans have. But to our knowledge, one of the first specific descriptions of someone who met the characteristics of the autistic spectrum was in the mid 1700’s. In 1747, Hugh Blair was brought before a local court to defend his mental capacity to contract a marriage. Blair’s younger brother successfully had the marriage annulled to gain Blair’s share of inheritance. The recorded testimony describes Blair as having the classic characteristics of autism, although the court described him at the time as lacking common sense and being afflicted with a “silent madness”.[1]

Isolated case reports appeared sporadically in medical journals. John Haslam reported a case in 1809, although with modern interpretation, the child probably had post-encephalitis brain damage rather than true autism. Henry Maudsley described a case of a 13 year old boy with Aspergers traits in 1879. There were no other reports of children with autism in the early literature, although at the turn of the 19th century, Jean Itard reported on the case of an abandoned child found roaming in the woods like a wild animal. This child, called Victor, displayed many features of autism, although he may have simply had a speech disorder. Either diagnosis was obscured by the effects of severe social isolation.[1]

Others described syndromes which shared autistic features, but without describing autism itself. The names given to each syndrome reveals how autistic features were regarded in the 19th century: Dementia Infantalis, Dementia Praecocissima, Primitive Catatonia of Idiocy.[1]

Around 1910, Eugen Bleuger was a Swiss psychiatrist who was researching schizophrenic adults (and as an aside, Bleuger was the person to first use the term ‘schizophrenia’). Bleuger used the term ‘autismus’ to refer to a particular sub group of patients with schizophrenia, from the Greek word “autos,” meaning “self”, describing a person removed from social interaction, hence, “an isolated self.”[2]

But it wasn’t until the 1940’s that the modern account of autism was articulated, when two psychiatrists in different parts of the world first documented a handful of cases. Leo Kanner documented eleven children who, while having variable presentations, all shared the same pattern of an inability to relate to people, a failure to develop speech or an abnormal use of language, strange responses to objects and events, excellent rote memory, and an obsession with repetition and sameness[3].

Kanner thought that the condition, which he labelled ‘infantile autism’, was a psychosis[1] – in the same family of disorders as schizophrenia, although separate to schizophrenia itself[2]. He also observed a cold, distant or anti-social nature of the parents relationship towards the child or the other parent. He thought this may have contributed (although he added that the traits of the condition were seen in very early development, before the parents relationship had time to make an impact)[3]. True to the influence of Freud on early 20th century psychiatry, Kanner said of the repetitive or stereotyped movements of autistic children, “These actions and the accompanying ecstatic fervor strongly indicate the presence of masturbatory orgastic gratification.”[3]

Despite the otherwise reserved, cautious discussion of possible causes of this disorder, the link with schizophrenia and “refrigerator mothers” took hold in professional and lay communities alike. In the 1960s and 70s, treatments for autism focused on medications such as LSD, electric shock, and behavioral change techniques involving pain and punishment. During the 1980s and 90s, the role of behavioral therapy and the use of highly controlled learning environments emerged as the primary treatments for many forms of autism and related conditions.[2]

Unbeknown to Kanner, at the same time as his theory of ‘infantile autism’ was published in an English-language journal, a German paediatrician called Hans Asperger published a descriptive paper of four boys in a German language journal. They all shared similar characteristics to the descriptions of Kanner’s children, but were functioning at a higher level. They shared some aggression, a high pitched voice, adult-like choice of words, clumsiness, irritated response to affection, vacant gaze, verbal oddities, prodigious ability with arithmetic and abrupt mood swings. Asperger was the first to propose that these traits were the extreme variant of male intelligence[4].

But the full impact of Asperger wasn’t felt until 1981, when British psychiatrist Lorna Wing translated Aspergers original paper into English. By this time, autism had become a disorder of its own according to the DSM-III, the gold-standard reference of psychiatric diagnosis, but it was still largely defined by the trait of profound deficit. Aspergers description of a ‘high-functioning’ form of autism resonated amongst the autism community, and a diagnosis of Aspergers Syndrome became formally recognised in the early 1990’s with the publication of the DSM-IV.

The most recent history of autism comes in two parts. The first was the revision of the DSM-IV. For the first time, rather than two separate diagnoses, Autism and Aspergers have been linked together as a spectrum and collectively known as the Autism Spectrum Disorders (although autism self-advocates prefer the term ‘conditions’ to ‘disorders’).

The second part is a highly controversial chapter that will stain the history of autism research and scientific confidence, into the next few decades. Chris Mooney, in a piece for Discover Magazine, sums it up nicely:

“The decade long vaccine-autism saga began in 1998, when British gastroenterologist Andrew Wakefield and his colleagues published evidence in The Lancet suggesting they had tracked down a shocking cause of autism. Examining the digestive tracts of 12 children with behavioral disorders, nine of them autistic, the researchers found intestinal inflammation, which they pinned on the MMR (measles, mumps, and rubella) vaccine. Wakefield had a specific theory of how the MMR shot could trigger autism: The upset intestines, he conjectured, let toxins loose in the bloodstream, which then traveled to the brain. The vaccine was, in this view, effectively a poison.”[5]

Inflamed by a post-modern distrust of science and a faded memory of what wild-type infectious diseases did to children, the findings swept through the internet and social media and lead to a fall in vaccination rates (from about 95% to below 80% at its lowest)[6].

But the wise words, “Be sure your sins will find you out”, still hold true, even in modern science. In 2010, Wakefield was found guilty of Serious Professional Misconduct by the British General Medical Council, and was struck off the register of medical practitioners in the UK. In the longest ever hearing into such allegations, the GMC considered his conduct surrounding the research project, the medical treatment of his child subjects, and his failure to disclose his various conflicts of interest to be dishonest and professionally and clinically unethical[7]. There is evidence that he also selectively chose his subjects to confound the results, misrepresented the time course of their symptoms related to the vaccinations, misrepresented their diagnosis of autism, and altered the reports of their bowel tests[8, 9].

For the record, this isn’t a comment on the science of Wakefield’s rise and fall, but the history. I am not suggesting that the proposed autism/vaccination link should be discounted solely on the basis of Wakefield’s scientific fraud. Rigorous science has already done that. The science for and against the proposed link between autism and vaccinations deserves special attention, and will be discussed in a future post. Rather, lessons need to be learned from what is one of the most destructive cons in the recent history of medicine.

The losers of this hoax are twofold. Thousands of children have unnecessarily suffered from preventable infectious disease because of a fear of vaccines that has turned out to be unfounded, and those who actually have autism miss out on actual funding because it was syphoned off into Wakefield’s pockets and into research disproving his rancid theory. As the editorial in the BMJ stated, “But perhaps as important as the scare’s effect on infectious disease is the energy, emotion, and money that have been diverted away from efforts to understand the real causes of autism and how to help children and families who live with it.”[6]

As with all good history, there are lessons for the future. Autism is still largely misunderstood. The vacuum of definitive scientific knowledge is slowly being filled, gradually empowering people with autism and the people that interact with them to truly understand and communicate. Each breakthrough and revision of the diagnosis has lead to more sophisticated and more humane ways of living with autism. But there is still a need for caution – people will use the gaps in knowledge and the pervasive distress that can come from the diagnosis, to manipulate and exploit for their own ends.

I’ll continue with the series in the next week or so, looking at the modern “epidemic” of autism.

REFERENCES:

1. Wolff, S., The history of autism. Eur Child Adolesc Psychiatry, 2004. 13(4): 201-8.
2. WebMD: The history of autism. 2013  [cited 2013 August 14]; Available from: http://www.webmd.com/brain/autism/history-of-autism.
3. Kanner, L., Autistic disturbances of affective contact. Acta Paedopsychiatr, 1968. 35(4): 100-36.
4. Draaisma, D., Stereotypes of autism. Philos Trans R Soc Lond B Biol Sci, 2009. 364(1522): 1475-80.
5. Mooney, C., Why Does the Vaccine/Autism Controversy Live On?, in Discover2009, Kalmbach Publishing Co: Waukesha, WI.
6. Godlee, F., et al., Wakefield’s article linking MMR vaccine and autism was fraudulent. BMJ, 2011. 342: c7452.
7. General Medical Council. Andrew Wakefield: determination of serious professional misconduct, 24 May 2010. http://www.gmc-uk.org/Wakefield_SPM_and_SANCTION.pdf_32595267.pdf
8. Deer, B., How the case against the MMR vaccine was fixed. BMJ, 2011. 342: c5347.
9. Deer, B., More secrets of the MMR scare. Who saw the “histological findings”? BMJ, 2011. 343: d7892.

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Autism Series 2013; Part 1 – Why it matters.

What do you think of when you think about autism?  Is it a TV character like Jake, from Kiefer Sutherland’s recent series ‘Touch’, or perhaps Sheldon from ‘The Big Bang Theory’?  Or is it a movie character like the savant that Dustin Hoffman played in ‘Rain Man’? They are common stereotypes, but they only depict a tiny fraction of the autism that is all around us every day.  Chances are, you would run into people every day who have autism.  Would you be able to pick them?

The current point prevalence rate of autism is given by various international health bodies including the World Health Organization, as one person in a hundred.  With a prevalence of one percent of the population as having autism, you would think it would be better known, better dealt with by teachers, better handled by public officials, better screened and managed by health workers, and better resourced in terms of assistance to families and in terms of research dollars.

But while funding and recognition are important, the greatest impact that the lack of autism awareness has is the human cost.  It is the cost that can’t be measured in terms of dollars, caused by the maligned stigma that having autism brings.

Autism at the less severe end, what used  to be called ‘high functioning’ autism, or what I prefer to classify as (the now unofficial diagnosis of) Aspergers Syndrome, doesn’t make a person look that much different on the outside.  But it makes their behaviour somewhat odd to everyone else.  They have quirks.  They have strange mannerisms.  They have rigid ways of doing things.  They have very narrow interests.  They misread social cues.

“Normal” people don’t like odd.  Especially children.  If you don’t fit in to their particular group-think view of the world, their intolerant tormenting can be merciless and unrelenting.  Some people never grow up though, and many adults with autism can be marginalised by their adult peers. Every barb, joke and isolating experience eroding at the soul of a person with autism until there is nothing left.

This is the most destructive of all. It is death by a thousand insults.

I am writing this series of blogs because I want to help assist in whatever way I can to reduce the ignorance surrounding autism.  There is still so much ignorance out there – simple ignorance because the message is still diffusing through our social networks, and  obstinate ignorance, by people who use pseudoscientific scare mongering to promote their views, or promote bogus treatments for the sole purpose of taking advantage of the desperation of some of those who live with autism.

No matter which form of ignorance is out there, ignorance is ignorance and it does the same damage.  It needs to be stopped.

When I was a little boy, I was odd.  It took me a while before I started talking.  I had an obsession with vacuum cleaners and watches.  I was the misfit, or the loner.  I was incessantly bullied in the latter half of primary school and almost all the way through high school.  I didn’t want to go out and be with large groups of other kids.  My parents made me go to marshall arts training, cub scouts, church groups and school holiday excursions.

I hated those social outings.  I had huge anxiety being in these large groups.  Even when I wasn’t being mocked or belittled, I still felt anxious because I didn’t naturally fit in with the other kids.  The leaders of the group would go out of their way to include me but that had the opposite effect of highlighting how much of a social misfit I was.  The anxiety was disabling when I was in middle high school.

Thankfully I was smart, mainly in maths and science.  Academic achievement was my only positive, so I took refuge in studying.  I graduated in the top percentile in my state, and made it into medical school.  I did a whole medical degree, five years in hospitals including several in subspecialty paediatrics, and a fellowship in General Practice, and another eight years of GP experience, before my son was diagnosed as being on the autistic spectrum.

Despite years of medical training, It’s only been since my son’s diagnosis that I have been realising just how much of my quirky behaviour and social dysfunction was due to the fact that I’m on the spectrum too.  All those years, I thought I was retarded, socially incompetent, a freak.  All those years, I was bullied, harassed and made to think I was stupid, just because I didn’t naturally understand the unspoken social codes , but no one explained them to me.

That’s nearly forty years of living with self-doubt, low self-esteem, low self-confidence, and various mental health issues, because I never knew, because no one else knew, because of ignorance and intolerance.

So it stings when I hear people spread mistruths about ASD, and it pains me when the mistruths are spread by people who should know better.  It makes me mad when the mistruths come from self-titled ‘experts’.

I don’t want my son going through the same stigma and denigration, or anyone else on the spectrum for that matter.  The truth about autism – what it is, what it is caused by, and what strengths autism bestows, need to hold sway so that death by a thousand insults is no longer tolerable in our progressive society.

I will publish further blog posts over the coming days to weeks on what autism is, on why it seems to be increasing, and the latest scientific evidence on what autism may be caused by.  I will devote a whole blog (or two) to the misinformation surrounding vaccines and autism.  So stay tuned.