Sunday, February 22, 2015

Autism in India and America



What’s the most interesting difference between Indian autism and American autism?  I think it’s the way parents and others perceive it.

Indian and American scientists both lament the low level of scientific understanding in their respective countries.  What’s interesting is how that affects people’s interpretation of autism.

In American we have a secular culture of blame.  “Someone did me wrong” is an all-pervasive theme in our culture.  We interpret everything from the behavior of other countries to the conduct of ex-spouses through that lens.

When it comes to “interpreting autism,” that thinking has spawned toxic notions like, “mercury poisoned my kid,” “vaccine took the light out of his eyes,” and “big pharma conspiracy.”  To many who hold such beliefs, the idea of natural causes or no real cause at all is beyond the pale.

India, on the other hand, has a highly spiritual culture of acceptance.  That permeates Indian society and it’s part of what makes that country so different from our own.

When it comes to autism, people seem much more likely to attribute it to the work of one deity or another. Or it’s the result of actions in a past life.  Or it “just is.”  The difference between those thoughts and American blame is significant. 

Obviously scientists and autism specialists in both countries may have very different ideas of autism’s causes, but the average person in the street does not – in either country. And this is about them, not the science and professional communities (which are in many ways very similar.)

If you’re a spiritual person, you don’t question what is to the degree secular Americans question everything.  In India, that applies to many things – not just autism.  When you visit India, you can’t help being struck by the poverty all around.  With hundreds of millions of people living on a dollar or two a day, and no resources to materially change that situation, there seems to be little alternative to acceptance. 

My short time in India suggests that we Americans can learn something from Indians.  Their spiritual acceptance feels a lot healthier than our blaming.  When you deal with a situation like autism – something that “is, and will remain” – acceptance is a healthier place than anger and blame.

I can say that in America and it often unleashes a fresh round of anger.  In India, they just smile and nod.


What do you think?

18 comments:

Mitch said...

I prefer real answers, or at least the attempt to build an evidence-based solution. Maybe that's my Western "bias" but blind acceptance without practical understanding leads nowhere. Belief systems may seem healthier at first glance but how much good does it really do in the long term? We have to question in order to progress. On the other hand, I agree that the philosophical stance of acceptance of autism as a natural difference and not a pathology in need of a cure is a helpful and healthy one.

Frank Kelly said...

I concur with Mitch.

J said...

This is interesting because I have always felt the same way. I am scientifically bent, but blending that with less personal judgement feels more real and comfortable to me.

Dale said...

This is all pivoting on the assumption that autism is "natural" deviation without any particular cause. I'm all for genuine acceptance, but still, everything has a cause. I don't think it's bad to want to know that cause. Apparently, being autistic makes me intensely curious (or so I'm told), so it's natural to want to know the workings of something, in this case autism. Whether it's spiritual, emotional, mental, psychogenic, environmental, pharmacological... whatever. I think anything is worth consideration, from a genuine scientific standpoint. Seems like a lot of people are rejecting things as a knee-jerk response because it doesn't fit with their optimistic view of autism/themselves. That's fine, they're allowed to do that, but they aren't allowed to claim scientific thought after the fact.

John Elder Robison said...

Dale, thanks for your thoughts. In my essay I do not suggest it's wrong to try and discover causes of autism and indeed I support such work in my roles on government autism committees.

The point of my comment was that assigning blame or alleging conspiracy is not a productive line of thinking for a parent, and it's injurious to the psyche of the autistic person.

The Indian sense of acceptance is to me a better thing, even though I pull believe in asking and answering the questions.

Dale said...

John Elder Robison, in Western Europe we have a lot of acceptance of a wide range of disabilities and disorders. At least this is what I perceive. I think the acceptance is a wonderful thing, but I do worry about the decline in drive and innovation that it is presenting. People are much more "let's perpetually manage this problem" when they should be more "let's fix this problem". The concept of fixing something that's wrong seems to hit people like an alien concept. Things which are not complex are for some reason now considered lifelong conditions that need perpetual management. Alcoholism, depression, obesity, the list goes on. Many autistic and other disabled people live in squalor, have no concept of financial responsibility, and lack basic forms of independence; not always for lack of acceptance and support, but for too much acceptance and support. This is the dark side of acceptance; intellectual laziness and lack of drive to truly solve any problems. This is a pervasive cultural attitude here, and while I believe it moderately enlightened, it's still lacking. Accepting something is only the (important) first step in a process, the next step should be solving whatever the problem is with a fervent forward momentum that only acceptance brings. I have little experience with the Indian perspective, but it's always struck me as a bit too submissive and resistant to meaningful change. We shouldn't forget why they're so accepting in the first place: blind acceptance is a potent tool in keeping the lower castes in their place.

I have no opinion on the vaccine or mercury theories, only that it remains worth consideration as far as I can see, as do a great many other things. I do not get this extreme emotional reaction to these concepts; scientifically they have to be considered; not reacted to. However I choose to stay far away from this debate, as I've no interest in people's oddly impassioned hatred in this area, which only serves to muddle things even more. I'll give it a few decades to see if the smoke clears and real clarity can prevail.

Jean said...

Your post really got me thinking. I feel that going through the anger and bargaining stage is a normal part of grieving for your child's diagnosis. For me, I couldn't go around it, I had to go through every stinking step of it.

However, I distinctly remember the moment (about 2 years after my son's diagnosis) when I realised that "hey, this is hard, but he's perfect as he is". From then on, life got a lot easier because I wasn't wasting time and energy raging against the machine, but started dealing with the present and enjoying the fabulous little boy I have.

So, acceptance is great.
But that doesn't mean we should stop asking questions.
It's important to search for a cause, to help future treatments etc. , but from a non-emotional position. The danger in blind acceptance could lead to a stagnation of developing education and social awareness.

However, if you don't let go of the anger at some point it'll damage your mental health and your child's self-esteem...our kids aren't stupid. They feel it when Mammy or Daddy doesn't love them just as they are.
So, for me, I vote acceptance, unconditional love while keeping one eye open on the big picture.
Fab post XXX

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Monica Manzano said...

Pardon if I write in disconnected thoughts. If I were to check my posts at fb, I could give an actual timeline in the meantime, let's say it was a while ago that Laurence and I had a chat about the hikikomori of Japan. Which led to a question 'how many of these hikikomori are on the Autism Spectrum. Which led to some words about shamans and religious figures being held in high regard. Something like, religious hermits are traditionally treated with respect thus perhaps some are just left alone. His suggestion was to look up 'the Law of Manu'. I did. Anyway, I still don't get what he was attempting to send me to. Except that it's in the caste system...a place for religious hermits.

This article has some of the words which he used, and I'm certain he has not read this piece. http://the-mouse-trap.com/2006/12/05/schizophrenia-religion-autism-and-the-indian-culture-alternate-title-life-the-universe-and-everything/

The 2nd to the last complete paragraph: In the pats, it was not infrequent, for those who had psychotic experiences to be labeled as shamans and to be treated with respect, rather than stigma and isolation; thus ensuring that they were not exposed to social stresses in the future.

Paul Greenewich said...

Acceptance need not be passive. As Victor Gollancz in his anthology The New Year Of Grace observed, “Acceptance… is by no means inconsistent with an unwavering and unending struggle against any wrong that human wills can right: the struggle, indeed, is steadied and strengthened by the acceptance.” He goes on to quote Carl Jung, who said, “We cannot change anything unless we accept it” and a patient of Jung’s who wrote, “I always thought that when we accept things, they overpower us in one way or another. Now this is not true at all, and it is only by accepting them that one can define an attitude toward them.” So we have the choice to view autism from the standpoint of positive acceptance, and in so doing continue to seek out the cause(s) as well as focusing on the needs both of those on the spectrum and those who look after them.

The question of attitude is key, and the challenge for researchers is how open-minded they are willing to be. The fact that autism is a spectrum condition underscores the individuality with which it manifests, and the extent to which it is regarded as an aberration that somehow needs to be ‘fixed’, or evidence of natural neurodiversity which might be of evolutionary importance. What seems not to be in dispute is that wherever we (I have Asperger syndrome) lie on the spectrum, we all experience our environment in a way that is qualitatively different from the neurotypical majority, and the resulting communication challenges impair, to a greater or lesser extent, our ability to integrate into ‘normal’ human society.

It is the social impact that leads me to wonder how we might view autism were we to regard the human species as a collective entity, whose well-being we were trying to assess. From this perspective, is the apparently rising incidence of autism, and mental illness where autism might be a component, inherently meaningful? Might it, for example, be symptomatic of human senses and sensibilities increasingly blunted through over-stimulation, of the ever more frenetic pace of life, of a disposable society hooked on instant gratification? Granted, at the individual level, the cause(s) of autism may well be a combination of genetic and environmental factors, but it may be impossible fully to understand the ‘why’ of autism except in the context of society as a whole and the current human condition. And how accepting should we be of that?

Vishal Kataria said...

Great post John.

The main reason Indian parents accept autism for what it is is because we don't know much about what causes it - whether vaccines or medication. Yes, we attribute it to God too, believing that He has given us something we deserve.

Thanks for elaborating on this so well!

Stephanie Crist said...

The cultural differences are poignant and I agree we can learn a lot from other cultures that would improve our own. On the other hand, if they're blaming certain deities or past lives, then they're still into the blaming aspect, if to a lesser and less hostile degree.

This is something I find troubling, because blame is associated with wrongness. As long as the global "we" view autism as something that is wrong with someone, we're far from the healthiest kind of acceptance--the acceptance of people with autism and the respect for them as people.

mywordsareneitherbeautifuloreloquent said...

Fist of all, I really appreciated your post. Thank you for sharing.

In response to the previous thread- So, it is of great importance that we as a society figure out why a portion of our population is highly intelligent, but not great at socializing. Does that mean that it is equally important that we figure out why there are some who are stellar socialites who are not very intelligent?

Deepshikha Patra said...

Hello Sir
I liked the way you brought the contrasting thoughts about the two countries in the way of their thinking and acceptance. But I would like to throw light upon certain other notions about India and its way of looking Autism.
Talking about the Karma Theory, it is true that it portrays an internal locus of control and therefore makes it easy for acceptance. But it does not really happen like that. It is surely one of the gateways here but I have explored a lot of blame game, trauma and shock here too.
In the rural parts of India you may notice a group of children playing together and you cannot make out any difference until you go closer. The level of acceptance is more there than in the metropolitan cities. I am a student of Human Development and Childhood Studies and my work and experience with children with Autism and Asperger’s has made me understand the difficulties the child and the parents encounter. Parents do go through the steps described by Duncan (1977)-

Denial- parents make excuses that their child is fine, her/his father or some uncle was also like that when they were her age and so on

Bargaining- parents think, may be charity, or astrology, or through Tantra they can help the child

Anger- seeing everything failing, they are angry with the world, with God and themselves. They blame God, blame themselves and ask why it happened to their child

Depression- parents become sad on not being able to help the child

And finally they accept the fact that their child is different

These stages are a result of the social construct. Since the beginning parents have high hopes from children and performing well in academics and being socially apt is a must. The pressure from the society in being a different family, the imprudent labels make the parents hide from the world. They stop going for outings, family gatherings and ceremonies. In many cases it also leads to family disputes, where the in laws blame the mother. Parents would sooner or later accept but the society does not. Lack of knowledge and awareness, insensitive socialization, weak empowerment model in spite of good laws and policies has surely made Autism a social disability.

Chirag Bhardwaj said...

Excellent read.

Karthikeyan V said...

Very nice blog. Thanks for sharing.

Karthikeyan V

Farzana Islam said...

I am the mother of a four year son who is on the spectrum....diagnosed one year back...he is under therapy now.
Like every mother, may be, my initial reaction was denial..., anger, depression etc. and finally the stage of acceptance. Now finally when i have accepted it...I do really think that If Almighty has chosen my son to be on the autism spectrum....there has to be some reason. I do feel that my son is special, I enjoy each and every moment with him.
This acceptance does not mean that we stop questioning....trying to find out the reasons...scientific explanation. Besides mother I am doctor too....thats why i keep on reading autism related aricles....studies...book...etc, and try to find out why/how it happens.
But to deal with my situation and to help my son to attain his maximum skill...acceptance, whole heartedly....is a must.
"Look me in the eye" is an excellent creation...its a inspiration for all.

Babu Sevagram said...

Recognising autism in a person helps them understand their unique social response.

Gets people around them to give additional support when they are faced with stress. They are often rigid in their views and behaviour and can be wrongly labeled as selfish, manipulative or anti social. Under sting that persons with autism experience the work differently helps improve communication and tolerance to diversity of human behaviour

Empathy and tolerance is lacking in persons with autism. They are more likely to dislike and not tolerate another autistic person than the Neurotypicals with mature spiritual understanding

Babu