www.aspie-editorial.com

First Published Sunday, 30th March, 2008.

Autism, Elective Mutism & Early Childhood

It is estimated that one in four or five of all those on the spectrum, never speak, but remain mute all their lives.

Both I and my daughter were elective mutes as children. It was school, that particularly hastened the need for verbal withdrawal. It wasn’t that we couldn’t speak, but that particular events such as death, illness and starting school were simply overwhelming. We were extremely well-read, and like many Aspies, were reading fluently from as early as 3yrs. When you’re autistic, very young and your Sense of Self is literally turned upside down, it’s not hard to understand why loss of speech occurs. It is said that Asperger girls do tend to be more quiet and reserved, well-behaved. Not in all cases of course, but this was certainly the case for us.

Home in both mine and my daughter’s case as young children, was sanctuary. My mother instinctively knew that I required strict routine. She was a dream parent in every way. My parents ran a tight ship, and had the recipe just right – strict(the rules were the rules) but warm and kind. My mother was not only very beautiful both internally and externally, she loved being a wife and mother, as I do. She was more than a mother though, she was most importantly my ‘teacher’. She bathed me in books from birth, she sat with me and guided me through every conceivable activity that any pre-school could ever have offered and more. I wasn’t closeted. She took me out into the world, introduced me to the theatre, to music, to art and creativity. I learned to appreciate every little thing. I went on to do the same with my own three children[all AS] and the multitude of children, many with special needs that came into my care from the time I turned 21 till now. I was always ‘doing’, never left to drift afloat as a child. That’s not to say I wasn’t given time to explore the world on my own. We were never allowed to wander or play in the streets, nor would we have wanted to, but we certainly had a wonderful, tropical haven of a yard to play in and plenty of discoveries were made therein.

At home, my inner world was radiant and every day was an adventure.

As a young child, thankfully, I was not over-exposed to television. It was kept absolutely minimal. I say, thankfully, because growing up in Queensland, it just doesn’t do to live your life indoors with that perfect climate day in, day out. I have autistic friends and acquaintances to whom TV was a very important factor for them as they were growing up, important to their sense of well-being(namely a wonderful author whose books and site I highly recommend. [You’ll find him in the following Newsletter – https://www.aspie-editorial.com/?p=123. In my case, I much preferred to be outdoors, where my imagination and creativity knew no bounds. The myth that autistic children have no imagination has surely been altered by now. My aspie brothers(who all later went on to become entrepreneurs), were inventor-types and incredibly creative and imaginative. We were always busy doing something interesting, be it building our own state-of-the-art go-carts, making a gramaphone from scratch, creating home-made films, photography(when polaroid instamatic cameras were new, one particular brother, already showing signs of the business skills he was later to fully utilise, would charge so much per photo), swimming in the ocean, painting, composing music, poetry, building tree houses, climbing trees, assembling and painting bicycles, creating elaborate cities and roads in the soil for those matchbox cars, which had been customarily lined up and categorized when we were very young. I was taught to take care of dolls as though they were real babies, washing and hanging their clothes on the miniature doll’s clothes line, bathing them, feeding them – all in all, a dream childhood. We were in no way financially wealthy, as my Dad was a carpenter with six children, but we were happy.

True to our autistic natures, we never particularly wanted ‘friends’ to come play. We preferred our own company, doing our own thing, sometimes coming together to enjoy activities, but more often than not, were happiest in our own space, keeping the ‘other’ at a distance. Contact with ‘friends’, was quite honestly not even desired. Let’s face it, bringing an outsider into an an autistic child’s world, is like an invasion of sorts. To later learn that as autistics, we are referenced to people, settings, places, put it all into perspective.

All good things must come to an end though, and elective mutism was not far off. The world came crashing down all too swiftly, just a few days after my 4^th birthday. I’d been sitting on my mother’s lap, as she’d had a guest come visit. We aspies don’t tend to cope so well with guests(our anxiety rises dramatically) and so I clung to her, much as my daughter clung to me, hid behind my skirts when younger and guests appeared. She’d been complaining of severe headache and once the guest departed, she needed to lay down, which for her was most unusual in the daytime. By that evening, we’d lost her – cerebral haemorrhage. She was just 35 years old, my youngest brother, just a baby still.

I didn’t cry. My behaviour was never outwardly that of a regular grieving child. Why would it be? I was autistic, very autistic. I was grieving though. I never stopped. I still do, for what would have been and what could have been saved. I was to cry 4 months later, at school, every day for months. I wanted her back and I needed the sanctuary of home. Poor teachers! I became a runner, running home from Infant’s School, to hide under my father’s car. Breaktimes were the worst and that was when I chose to run, staff unawares till class resumed. I must have prematurely aged my poor father with worry, who always knew that something wasn’t quite right, but who accepted me for who I was. My mother had been my guardian and protector from all things bad in the world. My father(High functioning autistic) was utterly grief-stricken. He’d adored her upon first glance at a local Brisbane dance. They married when she was a mere 17, and he was 21yrs of age. They were a wonderful match. She was a gentle yet strong neurotypical, very womanly, very intelligent and well read. He was in many ways child-like and in need of a strong woman. It ended too soon. I stayed silent for many years. I later went on to become a highly-graded and well-received public speaker at Schools and Universities, severe anxiety, heart palpitations well-hidden from view.

A paragraph from the New York Times article “The Child Who Would Not Speak A Word”:

“One of the most puzzling aspects of selective mutism is the fact that children stay silent even when the consequences of their silence include shame, social ostracism or even punishment. This paradox may be explained by the fact that at the heart of the disorder is the instinct for self-preservation, the natural urge to avoid frightening situations.”

I can tell you that having been psychologically and physically harmed by a substitute teacher over a two week period, despite being a well-behaved and high-achieving student, that shaming and punishing a child, because they are ‘too quiet’ does not make them want to talk. Being terrified, threatened and harmed does not make one less terrified. I felt well-liked and accepted among my peers, children wanted to befriend me. I was nicknamed ‘dolly’ by a loving and kind sister(AS), as I apparently had that particular look(was blonde, blue-eyed).  No particular ‘look’ is going to spare or save a child from their vulnerabilities though. It’s little wonder that those with ‘special needs’ are perfect targets for abusers, especially the ‘silent ones’. My understanding is that the current rate of abuse for those on the spectrum sits at around 85%.

There is a most wonderful book, recommended to me by an incredibly gifted and highly regarded man, who happens to be HFA. The book is entitled “Dibs – In Search of Self” and the author, Virginia M. Axline.

This is the story of a little boy named Dibs.

He would not talk. He would not play. Judged mentally defective, he was oblivious both to other children and to his teacher; in reality he was a brilliant, lonely child trapped in a prison of fear and rage, a prison from which only he could release himself.

For further information…

Links for elective/selective mutism:

Donna Williams “Selective Mutism”:
http://www.donnawilliams.net/selectivemutism.0.html

“Help Me To Speak programme…Seen But Not Heard…What causes Selective Mutism…Seeking Help…Treatment…Longterm Outlook…Related Articles”:
http://www.channel4.com/health/microsites/F/family/problems/mutism.html

Advice and assessment “Educational-psychologist”:
http://www.educational-psychologist.co.uk/mute.htm

Selective mute “Is your child mute or just shy?”:
http://www.essortment.com/all/muteselective_rdpb.htm

New York Times Article “The Child Who Would Not Speak A Word”:

“Until recently, the disorder was thought to be extremely rare, affecting about 1 child in 1,000. But a 2002 study in The Journal of the American Academy of Child and Adolescent Psychiatry put the incidence of selective mutism closer to 7 children in 1,000, making it almost twice as common as autism.”http://www.nytimes.com/2005/04/12/health/psychology/12mute.html?ei=5088&en=000d9e93a736ada0&ex=1270958400&adxnnl=1&partner=rssnyt&adxnnlx=1206817367-tjnRxJJbTazWAgyQG5xEVA

“Selective Mutism: Breaking the Silence”:http://aspie-editorial.blog-city.com/selective_mutism_breaking_the_silence.htm

“Selective Mutusm: Speaking Up For Silent Treatment”:http://aspie-editorial.blog-city.com/selective_mutism_speaking_up_for_silent_treatment.htm

[As an aside: Delay and abnormality of speech for those on the spectrum is very common. Kanner considered them to be an essential part of his syndrome, with difficulties varying in severity. So far as being mute goes, it’s been estimated that one in four or five of all those on the spectrum, never speak, but remain mute all their lives. Some are able to produce accurate copies of animal or mechanical noises and perhaps a single word once in a blue moon, but do not progress beyond this.]

1. Carol and Eli Surber left…

Selective mutism? I have read so many of Donna’s wonderful books. She has answered many unanswered questions for me. My son, Eli, stopped speaking at age three. He knew about 150 words…then just stopped. He did say one or two words sometimes. Now at age 32, he has a language of words no one understands but me. He has made up words, but mumbles mostly to himself. Never really anything we understand. He can ask for things in one word, He curses well, and in perfect timing to his situation. He is a quiet soul, but he does laugh! Carol