Prescribing dangerous drugs for a made up disease

Honestly, I don’t know if I can go on much longer.

I feel like every time I approach the wild waters of social media, I find myself drowning in a sea of shameless ignorance.  It’s like a post-modern intellectual zombie apocalypse where brainless morons roam cyberspace, relishing the opportunity to infect the minds of the innocent and gullible with their delusions of expertise.

As I’m sitting here writing, the little angel on my right shoulder is trying to get my attention.  “Everyone’s entitled to their own opinion,” she whispers softly.

Except it’s hard to hear when the little devil on my other shoulder is digging his pitch-fork in my brain and twisting it to make a point.  “But their opinion is crap,” he angrily retorts.

Tonight, the subject of my inner voice’s great debate was the Facebook headline, “ADHD: Drugs to treat disorder could create heart problems for children, researchers say.  Children under 18 who had ADHD and were prescribed methylphenidate were more likely to get an irregular heartbeat in the first two months, researchers said.”

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The little paragraph on Facebook didn’t mention any important facts, like what the article was that they quoted, or that the actual number of events linked with drug were miniscule.

That didn’t stop some clearly stupid people from publically venting their rancid opinions all over social media.

There were the usual paranoid delusions claiming that ADHD is over-diagnosed so that the American Psychiatric Association could get more funding from pharmaceutical companies.  Or that Ritalin has never been properly tested, and that children on Ritalin have been human experiments for the last 30 years.

Then there were all of the old chestnuts too, like ADHD is because of poor parenting or poor diet, or teachers with sub-par intelligence who aren’t challenging their pupils enough.  And who needs Ritalin anyway when all you have to do is stop feeding them artificial flavours and colours, high fructose corn syrup, GMO’s and fast foods.  Better yet, treat them with cannabis.

There were also some brazen displays of intellectual impotence within the heady mix of stupidity, like the people who suggested that children shouldn’t be given ANY drugs unless they’ve got diseases like cancer.  ‘Cause, clearly, paracetamol and penicillin are just as toxic as Ritalin.

Then there was the cherry on top:

“The doctor who came up with ‘ADHD’ and ‘ADD’ confessed on his deathbed that they were made-up diseases.”

Really??  Oh, come on, that’s both pathetic and grossly insulting.  ADHD is a real disease.  It’s been proven by real scientists and real doctors working in real labs and real hospitals.  Yet in the post-modern mind-bubble, an unverified viral meme on social media carries more weight than decades of scientific enquiry by some of the worlds smartest people.

For those of us who aren’t intellectual zombies, there was no death-bed confession about ADHD’s concoction.  According to a fact-check by Snopes.com, the doctor who ‘made up’ ADHD never said ADHD wasn’t real, but only that he thought the biological cause of ADHD was over-estimated.

Those who clearly knew nothing about ADHD or its treatment decided to further perpetuate their ignorance by embellishing and catastrophizing the “heart problems” that the Facebook headline alluded to.  Except that if they had bothered to review the article Facebook was referring to, they would have seen that there really wasn’t anything going on.

According to the article “Cardiovascular safety of methylphenidate among children and young people with attention-deficit/hyperactivity disorder (ADHD): nationwide self controlled case series study” [1], the only significant heart issue with Ritalin is a condition broadly classified as ‘arrhythmia’, which is medical speak for an irregular heart beat.  However, the peak risk for arrhythmia in the study was in children with congenital heart defects in the first few days of treatment.  For this, the relative risk was 3.49.  That means that a child with an already dodgy heart will have a three and a half times greater risk of an irregular heart rhythm than a child with a normal heart who’s not on Ritalin.  This sounds terrible, but “lies, damn lies and statistics” – in reality, the overall number of children who will actually get an arrhythmia because of Ritalin is still incredibly low because the total number of children who get arrhythmias is incredibly low.  Mathematically speaking, 3.49 x diddly-squat is still diddly-squat.

Besides, all of this is old news.  The current study was simply trying to use a larger source of data to get better statistics on case-reports of the possible effects of Ritalin.  But in the product information of methylphenidate, heart problems are clearly listed as a possible complication.  Because of this, and to ensure that Ritalin isn’t thrown around like candy, only medical specialists like paediatricians and child psychiatrists can start a child on medications like Ritalin.

So the reaction to the new study is nothing more than a storm in a tea-cup, but it clearly demonstrates the stigma and ignorance towards ADHD that, I’m ashamed to say, still exists in our modern, progressive society.

Is it any wonder then that parents actively avoid getting an assessment for their struggling children, or do everything they can to avoid Ritalin even when they have a clear-cut diagnosis of ADHD?  ADHD causes enough suffering by itself, but the baseless and incoherent ranting of the uninformed masses adds stifling layers of unnecessary stigma and misery to those who deserve our support, not misleading advice or irrational judgement.

References

[1]        Shin JY, Roughead EE, Park BJ, Pratt NL. Cardiovascular safety of methylphenidate among children and young people with attention-deficit/hyperactivity disorder (ADHD): nationwide self controlled case series study. BMJ 2016;353:i2550.

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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.