Autism Awareness Campaign - Normal vs Special

In today’s poster on autism awareness, I have presented a quote by Dr. Seuss.  “Why fit in when you are born to stand out”? More than a quote, it is the title of a blogpost. 

This is a very powerful statement.  We have a perception of “normal”, and we want our children to be seen as “normal”.  Anything which is not “normal” is considered as “wrong”.

I have been hearing the term “NORMAL” in the context of referring to people other than those having special needs.  And those with special needs are referred to as “SPECIAL”.  Even I too used to refer that way.  After working closely with few individuals with special needs during past few years, I start wondering who is “NORMAL” and who is “SPECIAL”.  

People who always worry about what others will think of them, are they “NORMAL”?  The “SPECIAL” ones never bother about what others think of them.

People who treat others based on their religion, cast, class in society, are they “NORMAL”? The “SPECIAL” ones have no idea about religion, caste and creed.

People who treat others with biases, are they “NORMAL”? The “SPECIAL” ones love everyone the same way.

People who consider some types of work as ‘low’, are they “NORMAL”? The “SPECIAL” ones consider all types of work with same respect.  We learn ‘Dignity of labour’ from them.

People who impose etiquettes originated from certain cultures, are thy “NORMAL”? The “SPECIAL” ones behave I n a way what they are comfortable with.  As far as it doesn’t hurt others physically or their behaviour doesn’t become vulgar, why should we force them to behave in a manner in which a certain group of people feel ‘correct’.   I have heard some people saying this ‘correct’ as “socially acceptable”.

People with autism, look at the world and different objects in the world through their own eyes and behave in a manner what they feel right and comfortable with. They naturally don’t follow any “socially acceptable” etiquettes. Isn’t a bit too much to force them or trying to ‘fit’ them, thereby snatching from them the opportunity to “STAND OUT”?

Autism Awareness Campaign - Myths and Facts III

We humans and most other animals appear to be equipped with a set of predictable responses to situations.  We call these the basic emotions: anger, fear, surprise, disgust, joy and sadness.  In today’s autism awareness poster, I am presenting two myths associated with autism and emotions.  

Emotions are biological states associated with the nervous system brought on by neurophysiological changes variously associated with thoughts, feelings, behavioural responses, and a degree of pleasure or displeasure.  It’s true that many people with autism don’t show emotions in ways that people without the condition would recognise.  

When we are in sad state, the autistic persons might show either no emotions or complete opposite emotion.  This leads to we feeling that they don’t understand our emotions or they don’t respond to our emotions.  

“Alexithymia” is a personality construct characterised by altered emotional awareness which has been gaining diagnostic prevalence, with notably high rates of overlap with autism spectrum disorder.  Whether the individual is autistic or not,  alexithymia decides whether he/ she has ability to understand / express emotions.

Would like to narrate a small incidence, may not be directly related the theme of the day. Once we (me, my wife and Pratibha) went for a function associated with death of a relative.  It must be about 10 - 12 years back.  The situation there was gloomy.  Most people were sad.  The wife of the deceased person was in tears in a room.  Pratibha was initially staring at everyone as she didn’t understand what’s happening.  She was smiling and talking to people.  Generally everyone would have assumed that she can’t understand emotions, or respond with the right emotions.   The widow of the person deceased was alone in the room, with tears in her eyes.  We all briefly met and condoled with her in her loss.  After we left the room Pratibha went to her and asked ‘what happened?’, with non-verbal action.   She responded saying that “uncle gone to god, so there is tears in my eyes”.  Pratibha asked her “why are you crying? Uncle has gone to god. Every day you pray god.  God will give whatever uncle wants. Then why sad?”.  For Pratibha, death means gone to god, that’s what we have told her.  The aunty got stunned for a moment, and hugged Pratibha and said, these are my last drop of tears! 

The conversation between Pratibha and the aunty was only between them.  No one else was there.  The aunty told us later what happened.  Pratibha was in joyful mood, when everyone else were sad, might be due to her understanding of ‘death’, or what we told to her ‘what death is’.  For her ‘god is good’, so ‘going to god’ has to be a happy thing.  Many would have assumed that because of autistic, she doesn’t understand emotions, and she happily moves around in a sad environment.  We need to understand how autistic persons look at things based on what we have told them and what we made them understand!  Isn’t it she is conveying more deeper meaning of spirituality? 

Autism Awareness Campaign - Myths and Facts II

Myths and Facts is a good way of understanding any any concept.  So I thought of presenting Autism myths and facts in this awareness series.  Today presenting two myths.  

There is a general perception that ‘Autism can be cured’.  As of now there is no cure for autism.  Some experimental studies like one published in 2017 covering stem cell transfusion in a small group of ASD patients, show promise.  And a 2016 lab experiment on mice showed that blocking production of a particular protein prevented autism-like symptoms from being exposed.  Not sure whether all such work will lead to any ‘cure’ for autism.  So the focus is more on managing the symptoms and behaviours through therapies, and not “curing” the autism.   

Another common myth is that all autistic persons have some exceptional talent. Many people have told me that for disabled (differently abled) people god gives some other talent or skill. This statement is based on the above myth.  Studies have shown that only about 10% of individuals on autism spectrum have savant skills.  These savant skills are not at all linked to the IQ of the person.  Very low function or low IQ individuals with autism can have savant abilities while high-functioning or high IQ individuals with autism may have no extraordinary skills at all.  Some research studies show that ‘savantism’ is seen in about 1% of general population, whereas it is seen in about 10% of autistic individuals.  

I will conclude today’s post with a quote by Kerry Magro. “Autism can’t define me. I define Autism”.

Autism Awareness Campaign - Myths and Facts I

There are many myths surrounding Autism.  Next couple of days, I will be taking up some of these myths and try to burst them.

There is a perception among public that Autistic persons don’t want friends.  This is a myth.  One of the most predominant symptom of autism is limited social communication.  There are few exceptions too, where few individuals with Autism communicate too much.  My daughter Pratibha had very milted social communication till around 20 years of age.  She use to see through people.  She could break it and come out.  Most autistic persons have the same feeling as many of us, regarding relationship and communication.  But they are unable to do so, which leads people to believe that they don’t want friends.

Another perception is people with autism are intellectually disabled.  Which is yet another myth.  There is a saying that “Autism is a disorder off high intelligence”!  One of the article in Additude magazine says, about half of autistic persons have higher than average IQ.  Listing just few names who are autistic but achieved a lot in their life, can burst this myth.  Many autistic persons can have intellectual disability also.   Previously, intellectual disability was generally called as Mental Retardation (MR).  Sad to see that even till couple of years back (must be the same now too), the disability certificate given by Govt hospitals mentions only “Mental Retardation” and it is mostly based on IQ. Autistic persons who have higher IQ and severe social communication and other autism symptoms, may not get a disability certificates. This would deprive them of some of the benefits provided by the government for “disabled”.  Not sure whether this is changed now.

Here is a list of few inspiring people on autism spectrum. Albert Einstein (Scientist & Mathematician), Bobby Fischer (Chess Grandmaster), Temple Grandin (A animal Scientist), Daryn Hannah (Hollywood Actress), Thomas Jefferson (Early American Politician), James Joyce (Author of “Ulysses), Susan Boyle (Singer), Tim Burton (Movie Director), Emily Dickinson (Poet), Bill Gates (Co-founder of Microsoft), Michelangelo (Sculptor, Painter, Architect, Poet), Sir Issac Newton (Mathematician, Astronomer & Physicist), Nikola Tesla (Inventor), Amadeus Mozart (Classical Composer), Lewis Carroli (Author of “Alice in Wonderland”.. The list goes on..  

I will conclude this post quoting a famous statement from Temple Grandin. “What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing out in cave, chatting, socialising and not getting anything done”.

Autism Awareness Campaign - Sensory Integration Issues

Today’s topic of Autism Awareness is Sensory Integration Issues.  Sensory Integration Dysfunction or Sensory processing Disorder (SPD) is a condition, where multi sensory integration is not adequately processed in order to provide appropriate responses to the demands of the environment.

Different sensory integration issues makes it difficult for most autistic persons to behave like other “neuro-typical” persons in many situations.  Intentionally I don’t use the term “normal”, because after seeing and dealing with many persons with autism, I am not clear who is “normal”.

It takes time for parents to identify and understand the sensory issues.  

In the case of Pratibha, she has very little physical pain.  She had sensory issues with darkness, water and loud noise.  We couldn’t take her to any place, where there is loud noise and darkness. Also couldn’t take her to beach, swimming pool etc.  Another peculiar sensory issue is with drinking water.  We have to change the taste of water by adding few drops of lemon to water, so that she can drink.  It took us quite some time to realise that it is a sensory issue.

Once I was sitting in a get together of parents with autism.  Our children were also there.  Suddenly one girl comes from behind and puts the top button on my shirt and leaves.  She does it for many people sitting there.  Yes, she can’t tolerate “Clumsy” buttoning.  A sensory issue.

Many special schools, where Autistic children go, have sensory rooms, sensory toys and sensory walkways that help the children develop different senses and reduce their sensory integration issues. Sensory rooms are softly lit, quiet space filled with captivating lights, soothing sounds, and cozy swings.  It’s like a playground but intended for taking a breather, instead of burning off excess energy.

Occupational Therapists are skilled and trained to help address sensory issues.  Sad to see that we don’t have enough Occupational Therapists in the country. Considering the rise in autistic population, it is imperative that we need to have more occupational therapists.

For many years Sensory Processing Disorder (SPD) was seen as a “symptom” of autism, but a breakthrough study in 2013 found that this disorder had a biological basis that separated it from many other neurological disorders.  Recently it was established that SPD is actually a standalone disorder, and that children can have SPD and not autism, and vice versa. 

Autism Awareness Campaign - Causes of Autism

Today’s poster in Autism Awareness series touches up on causes of Autism.

Never there was any agreement between experts on Causes of Autism, and exact cause of Autism is not known. There was a report in 1998, that proposed a link between autism and MMR (measles, mumps and rubella) vaccine.  This study has been debunked by other research and was eventually retracted in 2010.

Experts believe that there are certain factors that may increase risk.

Genetic factors:  It is believed that if you have a brother, sister, twin or parent with ASD (Autism Spectrum Disorder), you are likely to develop it as well.  After getting to know many families with an autism child, I have hardly seen such a situation.  Unfortunately this stigma still stays, and I know quite a few families finding it difficult to get marriage alliance for siblings of Autistic persons. 

ASD rates seems to be much higher among children with fragile X syndrome and tuberous sclerosis.

Environmental factors: Some experts suspect that exposure to heavy metals (especially Mercury) and other toxins in the environment raises risk of ASD.  If mother takes drugs with heavy metals / toxins while she is pregnant, that raise the risk.

Some expert say, low birth weight is a risk factor.  It was true with Pratibha’s case.  Her birth weight was low.  I’m not sure, what led to low birth weight.  Couple of doctors told us that not getting sufficient oxygen at the time of birth could lead to injuries in brain, resulting in higher risk.  I suspect, this could be reason in Pratibha’s case.   A PET scan of brain much later confirmed that there are quite a few inactive areas in the brain. 

Now the question of “What is the reason for high rate of increase for prevalence of autism”? 

Most common issue cited for increase in ASD prevalence are frequently changing diagnostic criteria for the ASD and even the definition of subcategories of autism and autism related disorders.  

Survival rates of premature infants increased over a period of time.  The premature / low birth weight babies are likely to be affected by neuro-developmental disorders including autism. This adds to increased rate of prevalence.

Research methodologies followed for estimating prevalence of ASD varies.  Even this adds to inaccuracy in numbers.

Higher rate of increase is observed in last couple of decades in developed countries, possibly because of factors related to lifestyle. 

Still the causes and reasons for increase of Autism prevalence seems to be very subjective. Lots of unknowns.. We are wading through an unknown territory..  

Autism Awareness Campaign - Prevalence of Autism

As part of Autism awareness, we need to be aware of prevalence of Autism.  Many different numbers are floating around in different documents.  I believe, the numbers give us an indication of how deep this disorder has spread among us.  The very first study seems to have done is in 1970 in the US, indicated a number “1 in 10,000”.  In 2018, the number stands at “1 in 36”. An alarming rate of increase, 277 fold. [Source:  “Political Economy of Autism”, by Toby Rogers, University of Sydney, 2018].

Some of the studies show India’s number to be at around “1 in 100”.  Even that number is frightening.  These are based on some localised studies focussing few areas.

The number in China seems to be “1 in 385” even in 2018, comparatively lower compared to other countries.    

Additional cost that families have to bear to take care of family member(s) with Autism is also increasing day by day.  It is not easy to find right therapists, doctors and care givers.  With about 12-17% annual increase in prevalence, it is getting tougher for families to find resources to manage an Autistic person in family. 

There are many professional bodies, that try to help families manage this, in their own way.  But, I don’t see any coordinated activities among different NGOs.  Need of the hour is, awareness among common public, willingness to accept persons with Autism as part of society, and contribute in making each and every service in the country inclusive.  A long way to go.. Many battles to fight..