Hans Asperger – A Man with a Conviction

In 1943, the University of Vienna was merely a shadow of itself – of the nearly two hundred senior members of the medical faculty, fewer than fifty remained. Some had been forced to flee the country, some were in exile, imprisoned in concentration camps or dead of suicide.

In the period of fanatic Nazism, of eradicating persons who are “life unworthy of life”, Hans Asperger stood firm and propounded his belief that autistic children are not “defects”.

In his thesis, “Autistic Psychopathy in Childhood, 1944”, he wrote:

“The example of autism shows particularly well how even abnormal personalities can be capable of development and adjustment. Possibilities of social integration which one would never have dreamt of may arise in the course of development. This knowledge determines our attitude towards complicated individuals of this and other types. It also gives us the right and the duty to speak out for these children with the whole force of our personality.”

On October 3, 1938, he gave the first public talk on autism in history, in a lecture hall filled with swastikas. He remarked:

“Today, let me not discuss the problem from the point of view of the people’s health, for then we would have to discuss the laws for the prevention of diseased genetic material; instead we will address it from the point of view of the abnormal children. How much can we do for these people? That shall be our question…Not everything that steps out of the line, and is thus ‘abnormal’, must necessarily be ‘inferior’.”

The gravity of his words hits one, when one takes into account the social and political context. His courage to stand alone in the face of colleagues who have lost their rationality and humanity, shows extraordinary strength of character. His fearlessness in conviction and compassion, should be written in history.

To find out more, read NeuroTribes.

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A Note on Education

As gleaned from NeuroTribes:

In 1911, Erwin Lazar founded the Children’s Clinic in Vienna. Instead of seeing special children as flawed, broken or sick, he believed they were suffering from neglect by a culture that had failed to provide them with teaching methods suited to their individual styles of learning.

He viewed each child as embodying a particular archetype and when he characterised children with one word, it was the clearest possible way of describing their particular abilities, talents and future prospects. He understood the child’s problems and the way in which they were the natural consequence of his or her personality. He knew which side of the child’s personality needed to be handled with care, what challenges he/she could face and how his/her future path could be shaped.

He aimed to turn his clinic into a more humane society whereby children could learn to interact in a context of mutual respect and appreciation. He said “It must give every child a chance to find a comrade like himself.”

Also, he believed that only by watching a child in course of his/her daily life could the true dimensions of the child’s condition be gauged and not though a battery of tests. It was a looking with open eyes, open minds.

Importantly, the standards of “normal” conduct was open-ended. The criterion for classifying behaviour as normal or abnormal was the challenges that it created for the individual child, not whether it strayed from an idealised template of psychological health.

Beyond the formulation of diagnosis, the clinic sought “to determine the innate capacities of the child, the alterable components of his personality, the causes of his pathological behaviour, what will best assure his personal happiness, security and social welfare, what his right place is in the family, society, what are his personal goals and ambitions, and how these can all be realised.”

The open-ended approach to educating children, especially those with special needs, is invaluable. Often, the education system tries to fit all into a straitjacket of perfection, suppressing individuality and ensuring performance. Arguably, this is a system that does not respect personhood or appreciate natural development. It is unfair to place children under a tyrannical system of stress upon stress, disregarding their personal needs and wants.

A Note on Autism

As gleaned from Neurotribes:

Children with Autism receive an alphabetical soup of treatments and tests that include:

  • Occupational Therapy (OT)
  • Speech-language Pathologist (SLP)
  • Individualised Education Program (IEP)
  • Allergy Testing
  • Applied Behaviour Analysis (ABA)
  • Holding Therapy
  • Biomedical Intervention – Gluten-free Casein-free (GFCF) Diet & High-dose vitamins, minerals, probiotics, enzymes and supplements
  • Infrared Therapy
  • Chelation – process of removing heavy metals from the body
  • BioSET – enzyme therapy, acupressure, homeopathy and chiropractic
  • Drinking camel milk
  • Bleach Enemas
  • Home Hyperbaric Chambers
  • Healing through skull massage

These treatments and tests cost parents thousands of dollars each month; yet many of them were based on iffy science and evidence. The massive search for cure in the early 2000s was due to common perception that autism marked “the end of the world” for a child and that it was a condition that could be eradicated.

These days, we know that some if not most, autistic children can become independent and functional adults with behavioural and speech therapy. Also, we know that some may see vast improvement such that they are no longer ‘obviously’ autistic while others may see little improvement and still require work. Autism is no longer viewed as something to be or can be destroyed from within the child. It has become a condition to work with, to find acceptance and peace with.

The slew of misdirections highlight the desperation of parents to get the best help for their child. It also raises the importance of public trust in a nation’s scientific and medical bodies such that people are not compelled to seek alternative treatments from pseudo-scientific/medical clinics.

A Note on Intersex

As gleaned from Rethinking Gender by Robin Marantz Henig:

We have learnt that sex chromosomes determine a baby’s sex: XX means its a girl and XY means its a boy. However, there are exceptions to the general rule.

First, when the SRY gene is missing or dysfunctional:

An XY embryo fails to develop male anatomy and is identified as a girl at birth, or an XX embryo develops male anatomy and is identified as a boy at birth.

Second, when one has complete androgen insensitivity syndrome (CAIS):

An XY embryo’s cells respond minimally, if at all, to the signals of male hormones. Even though the protogonads become testes, and the foetus produces produces androgens, male genitals don’t develop. The baby looks female, with a clitoris and vagina.

In one case, parents lied to their 17 year old that she had to remove precancerous ovaries when she in fact, had her undescended testes surgically removed.

Third, when an enzyme that converts testosterone into potent hormone DHT is missing:

When the DHT is absent, the tubercle in the embryo becomes a clitoris. The baby looks female and is raised as a girl. However, during puberty, which requires only testosterone and not DHT, the child turns into a man. What at first appeared to be a clitoris grows into a penis.

At the end of the day, we realise that some people face a lot more confusion in their lives than we ever will; and life goes on.

We are more different than we expected.

Our focus on extrinsic differences misses the truth that we are more intrinsically different, more than we can envision. We are a kaleidoscopic pool of phenotypes, genetic traits and disorders.

With a mutation in a gene for collagen – a protein that forms and strengthens bones – some have brittle bones that crack spontaneously. With a mutation in a gene responsible for structural integrity of the skeleton and blood vessels, some grow unusually tall and tend to die of sudden ruptures of the heart.

Some men drink and smoke and die at 70 while some healthy men die at twenty with a sudden heart attack. Some have more fingers than others, and some even bear a permanent odour of fish.

Our intrinsic differences that manifest (sometimes) extrinsically are explained by McKusick’s taxonomy of genetic diseases:

First, mutations in a single gene can cause diverse manifestations of disease in diverse organs.

For example, in Marfan syndrome, a mutation in a structural protein affects all connective tissues. They have recognisably abnormal joints and spines and unobservable, weakness of vessels and arteries. Marfan patients often die young due to rupture of blood vessels.

Second, multiple genes could influence a single aspect of physiology.

For example, blood pressure is regulated through various genetic circuits and abnormalities in one or many of these circuits all result in the same disease – hypertension.

Third, certain genes only become actualised into phenotypes depending upon environmental triggers or random chance.

For example, inheritance of the mutant BRCA1 gene increases the risk of breast cancer dramatically, but not all women with this mutation will develop breast cancer.

Fourth, genetic mutation is merely a variation in a natural environment.

For example, a tall man in a nation of dwarves is a mutant or a blond child in a country of brunettes. The issue then, is not the mutation itself but the disability caused by the mismatch of genetic endowment and the environment.

All in all, our genetic makeup vary vastly, and mutations may by chance, manifest. Why we do we see only physical differences and miss the differences that truly impact our lives?

If we realise that someone who is like us, on the surface, may just drop dead the next minute due to a congenital defect, then what did we have to compare just then? If we realise that someone can suffer emotionally, psychologically just because he was predisposed to, genetically, then why do we judge?

For more information, do read The Gene.

A Note on Tourette Syndrome

People with tourette syndrome have tics – involuntary movements and/or vocalisations. Having tics has been described as “wanting to sneeze” or “having an itch”, and suppressing them is impossible or can make them worse. At times, some experience tics so severe as to cause whole body convulsions, akin to seizures.

People with tourette syndrome are normal persons with intellectual capability, skills and talents. If not for these uncontrollable gesticulations, they would be just like us, with functional lives. What makes life difficult for them is our lack of understanding of their condition and our inacceptance of differences. Most of them face constant bullying and obviously, invite unpleasant stares in public. The embarrassment they constantly face causes anxiety disorders and even depression. 

What we don’t understand, we misunderstand and cause unnecessary hurt. Hence, it is important for all educators, children, members of the public to be educated on the syndrome and to provide support and acceptance to these people.

Importance of emotions

“In one respect my mind had changed during the last twenty or thirty years…Formerly pictures gave me considerable, and music very intense delight. But now…I have almost lost my taste for pictures or music…My mind seems to have become a sort of machine for grinding general laws out of large collections of fact…The loss of these tastes, this curious and lamentable loss of the higher aesthetic tastes, is a loss of happiness, and may possibly be injurious to the intellect, and more probably to the moral character, by enfeebling the emotional part of our nature.” – Charles Darwin