***EXPLORING THE AUTISTIC SPECTRUM

I was always told that if you want to learn something you should ‘ask an expert’ and so when I set out to write a short booklet on anxiety in the late 1980s, I decided to begin my research by reading books and articles by or about people with ASD themselves. 

It was then I found that most of the accounts I came across said similar things - only it wasn't just anxiety that was mentioned time and again  - for nearly all of them detailed some extremely strange sensory experiences: which left the person concerned hypersensitive to noise, bright lights, touch and even taste and smell.   Perhaps such things account for the famous quote by Temple Grandin who said that she and other people with ASD feel like ‘anthropologists on Mars’?

Today Dr Grandin, a Professor of Animal Science at Colorado State University, is known internationally for designing cattle-handling equipment which is used in countries across the world, whilst also lecturing and writing about autism and animal welfare.  But she first came to the public's attention  back in 1986, when she dropped a bombshell into the world of autism by publishing her autobiography entitled Emergence - Labeled Autistic. 

In it she talked of being hypersensitive to sound and touch saying that she was ‘…cut off by over-reactions or inconsistent reactions from my five senses, especially sound’: problems which made social occasions extremely distressing as they produced a confusion of startling sensations.

She talked about her longing to be touched and hugged and then described how such things actually caused pain, giving a comical description of ‘one very, very overweight aunt’ whom she really liked but who ‘totally engulfed’ her, leaving her feeling as if she was being ‘suffocated by a mountain of marsh-mallows’, while having her hair washed was torture and wearing scratchy clothes felt like being  sandpapered.

It stunned many people – including some professionals – because it challenged the preconceived view that a diagnosis generally meant that the person would never achieve much and that he or she would probably always need sheltered accommodation or support, she is not alone in experiencing such things.  Thus in A Real Person: Life on the Outside  Swedish-born author Gunilla Gerland also detailed similar weird effects - how she hated showers because the drops of water had sharp little points that stabbed her, or how she became oversensitive to combs and hairbrushes when she was eight.  After that she too found that having her hair done was really painful; for it seemed as if her head was on fire causing a pain that even reached into her ears.

In 1987 Canadian Darren C. White co-authored an article entitled Autism from the Inside in which he described experiencing a whole range of similar problems in his early childhood. He talked of touch being excruciating - not just when people tried to cuddle him but also if anyone tried to make him hold a pencil or do up his laces or his buttons.

He found noises frightening and painful too, with the vacuum cleaner and food mixer sounding much louder than they actually were.  He also hated going into town because it was so noisy.  Similar problems affected his hearing badly so that conversations sounded distorted.  As he described it he could hear a word or two at the start of a sentence but then the following words merged into one another so that everything sounded like nonsensical. 

Even worse were the problems caused by his eyesight, for it blurred on bright days and also played tricks on him at times,  making things look smaller - or different - than they actually were.  Thus once he broke his collarbone because he tried to sit on what he thought was a wide windowsill swiftly falling off what was actually a narrow radiator.  How strange.
Next a biography,   The Sound of a Miracle byAnnabel Stehli.  In it she discussed the various problems which her daughter Georgiana faced.  She recalls how, at the age of twelve, Georgiana called her over to look at a fleck of dandruff in which she saw a rainbow of colours while all Mrs Stehli saw was a greyish flake.  That led her to realize how exceptionally good Georgiana's eyesight was.   So good in fact that a strand of hair looked like a piece of spaghetti to her. 

That led her to wonder whether her daughter's other senses were affected in the same way.  Georgiana confirmed that they were, and told her mom that sound was the most scary,  because it went on all the time and she couldn't get away from it.

Finally Christopher Goodchild,  author of A Painful Gift, who was only diagnosed with Asperger's at the age of forty-four.  Adopted when he was just six weeks old Christopher too shared similar problems to lights, sounds and smells saying that they flooded his senses and made his world seem overwhelming.  He even compares his feeling at being held by his parents to the feeling many of us get when we hearing fingernails scraping across a blackboard: a word picture that makes me shudder even as I write.

And it is such accounts that make it clear that many people with ASD live in a nightmare world. Hardly surprising then that they find much of life puzzling and terrifying …

Sadly though in the past many professionals dismissed the accounts of  people on the spectrum or even questioned the veracity of their experiences, calling their accounts ‘anecdotal’.   Difficult to believe that could be so when their accounts span several decades and come from people of all ages and abilities, living in different parts of the world.

Such comments can severely damage lives - and has in some cases led to misdiagnosis and even undergone the wrong treatments.  But that is not the only damage.  Imagine what such disbelief does to people.  How it makes you feel when those things that you experience on a daily basis - things that make large parts of your life extremely difficult - are ignored or lightly dismissed.  Surely it must eat away at your self-esteem and leave you feeling that others simply do not care.  Not only can such things lead to  depression or stress related illness but sadly it also makes some people with ASD blame themselves for their differences and difficulties.

However, as you've no doubt noticed, the people I've mentioned so far all grew up some time ago, before the increase in ASD that seemed to occur around the late 1980s and 19990s.  So the next article will look at whether children born after that time also have such sensory problems.